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mearbhall

Hypothyroid on TRT, is Nebido causing problems?

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First post, hoping someone can give a steer on what I need to change.

I am a 49-year-old male and my main symptoms are fatigue, clumsiness, brain fog and severe cognitive issues.

In 2017 I was diagnosed with Hashimoto’s disease, causing hypothyroidism, and secondary hypogonadism (Testosterone 6.11 nmol/L (7.60 – 31.40), FSH 1.6 IU/L (1.50 – 12.40) and LH 2.82 IU/L (1.70 -8.60)). A review of my thyroid results confirmed I have been hypothyroid for over 15 years despite my GP always saying my results were fine.

For my hypothyroidism I have tried Levothyroxine, Liothyronine and Levothyroxine, Natural Desiccated Thyroid (Erfa then Armour and then Erfa again) and now Levothyroxine with Natural Desiccated Thyroid. For SH I was initially given gels but after 5 months changed to Nebido on 11 week interval. All meds are via the NHS.

Over the last 3 years I have had short periods ranging from 3 to 10 days when I felt I was getting better physically, but not cognitively, only for symptoms to return. 

At the beginning of last year I was diagnosed with Heterozygous Haemochromatosis and I am currently under the care of an NHS Haematologist. Ferritin levels were 700-800 ug/L at the time but have since come down and now are generally either below or at the bottom of range (currently19 ug/L) whereas Saturation levels have always been high (81.00% (<45%)). I also have secondary polycythaemia, generally controlled by venesection, although my low ferritin levels don’t allow the venesections to be as frequent as they probably should be.

I also have non-alcoholic fatty liver.

My belief is that the Nebido injections are adding to my problems due to causing complications with high hgb and hct, coupled with Haemochromatosis, and I would probably be better off on shorter intervals of a different injectable and maybe adding HCG. It also doesn’t help that ferritin level needs to be around 100-120 ug/L for thyroid meds to work effectively.

 

Also, does any know who the go to NHS specialist is now that Dr. Hackett (who originally diagnosed me) has retired from the NHS?

Thinking of trying Dr Savage, as I am in Birmingham and he’s not too far away, but can’t afford private meds (and I already get my meds via NHS). 

Any advice would be appreciated.

 

 

 

 

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On 21/06/2020 at 9:55 PM, mearbhall said:

First post, hoping someone can give a steer on what I need to change.

I am a 49-year-old male and my main symptoms are fatigue, clumsiness, brain fog and severe cognitive issues.

In 2017 I was diagnosed with Hashimoto’s disease, causing hypothyroidism, and secondary hypogonadism (Testosterone 6.11 nmol/L (7.60 – 31.40), FSH 1.6 IU/L (1.50 – 12.40) and LH 2.82 IU/L (1.70 -8.60)). A review of my thyroid results confirmed I have been hypothyroid for over 15 years despite my GP always saying my results were fine.

For my hypothyroidism I have tried Levothyroxine, Liothyronine and Levothyroxine, Natural Desiccated Thyroid (Erfa then Armour and then Erfa again) and now Levothyroxine with Natural Desiccated Thyroid. For SH I was initially given gels but after 5 months changed to Nebido on 11 week interval. All meds are via the NHS.

Over the last 3 years I have had short periods ranging from 3 to 10 days when I felt I was getting better physically, but not cognitively, only for symptoms to return. 

At the beginning of last year I was diagnosed with Heterozygous Haemochromatosis and I am currently under the care of an NHS Haematologist. Ferritin levels were 700-800 ug/L at the time but have since come down and now are generally either below or at the bottom of range (currently19 ug/L) whereas Saturation levels have always been high (81.00% (<45%)). I also have secondary polycythaemia, generally controlled by venesection, although my low ferritin levels don’t allow the venesections to be as frequent as they probably should be.

I also have non-alcoholic fatty liver.

My belief is that the Nebido injections are adding to my problems due to causing complications with high hgb and hct, coupled with Haemochromatosis, and I would probably be better off on shorter intervals of a different injectable and maybe adding HCG. It also doesn’t help that ferritin level needs to be around 100-120 ug/L for thyroid meds to work effectively.

 

Also, does any know who the go to NHS specialist is now that Dr. Hackett (who originally diagnosed me) has retired from the NHS?

Thinking of trying Dr Savage, as I am in Birmingham and he’s not too far away, but can’t afford private meds (and I already get my meds via NHS). 

Any advice would be appreciated.

Hey. Sorry to hear of your health issues. Bearing them in mind, if you decide to go non NHS, Id argue you’d be best to have private TRT, rather then using UGLs etc.  You’d probably benefit from a professionals guidance in regards to it all. 

I’m with Dr savage. Just to make you aware that while Covid is among us, you don’t have to go to the clinic for a consultation And everything can be done over the phone. He’s a good guy. He managed to get my GP on board for blood tests and the two of them can have some dialogue if necessary. That May be beneficial to you in discussing other medical concerns etc. 

Also in terms of costs, obviously I don’t know how you define “affordable” but some guys come on here thinking TRT costs £1000’s a year. And sure it can be £1k+ depending on which provider you go with, but I’m paying  significantly less than what I first expected. Costs me about £30 month (membership/sustanon), £50 month with HCG (and you probably won’t require HCG tbh unless fertility/ball size is of concern). 
 

Good luck with whatever you decide. 

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Thanks for the response.

As things stand, Sustanon is definitely an option via my GP and Test E is a strong maybe so it may well be that I don't actually need to get testosterone from Dr Savage. If that was the case and my GP sorts out my blood tests I guess the membership will just be paying for correspondence with Dr Savage and any letters he needs to write to my GP? And if HCG is required that works out at around £20/month on its own?

From your knowledge and experience is it the case that smaller, more frequent doses will minimise the elevation of HGB and HCT, even if it's just 7 day dosing compared to 14 day dosing, or is that more of a logical presumption rather than medical reality?

If that is the case and things work out via the NHS am I right in saying the first hurdle is going to be convincing my GP to allow smaller, more frequent doses rather than sticking to NHS guidelines or is this the sort of thing Dr Savage will sort out with my GP?

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3 hours ago, mearbhall said:

Thanks for the response.

As things stand, Sustanon is definitely an option via my GP and Test E is a strong maybe so it may well be that I don't actually need to get testosterone from Dr Savage. If that was the case and my GP sorts out my blood tests I guess the membership will just be paying for correspondence with Dr Savage and any letters he needs to write to my GP? And if HCG is required that works out at around £20/month on its own?

From your knowledge and experience is it the case that smaller, more frequent doses will minimise the elevation of HGB and HCT, even if it's just 7 day dosing compared to 14 day dosing, or is that more of a logical presumption rather than medical reality?

If that is the case and things work out via the NHS am I right in saying the first hurdle is going to be convincing my GP to allow smaller, more frequent doses rather than sticking to NHS guidelines or is this the sort of thing Dr Savage will sort out with my GP?

If you can get sustanon (or even better test E) on the NHS, then I’d definitely pursue that. Sustanon on a private TRT prescription is cheap (less than £4 for a 1ml vial), Test E is about 3-4 times that cost.  Nothing is cheaper then NHS Providing it obviously. 
 

You would have to check with dr savage that he’d be happy to Only “advise” alongside your GP in regards to Ongoing TRT. However, If you could find a GP or endo knowledgable about TRT you wouldn’t need him at all. And I know that’s easier said than done. 
 

I don’t know if you can get HCG on the NHS, but what’s your purpose for wanting it in the first place?  ... Il be honest, I’m doing HCG from an UGL as I had a prescription for it from dr savage and couldn’t find it in stock anywhere. The only place I could was like triple the price of a UGL and for the same thing, not worth it. Most HCG comes from India Apparently and so with the travel restrictions due to Covid that’s played a massive part. 
 

A lot of TRT doctors discuss the benefits of microdosing, the men’s health clinic have a really good article about it that I read not that long ago and I know they and dr savage both advise in weekly or bi-weekly injections for most.
 

Anyway.  If you can convince your GP to allow you to self administer then you’re in control to do what you want then. 

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OK, so purely from a cost to the NHS point of view, even if Test E was £20 per 250mg/1ml vial it would still be quite a bit cheaper than the cost of Nebido over the course of 10 -12 weeks? I thought it was going to be a lot more expensive.

Guess you already know how difficult it is to find an endo that has the first idea about TRT, and is prepared to move away from Nebido, but when you throw hypothyroidism and haemochromatosis into the mix, there really is no point looking.

Regarding HCG I am just curious to see whether it would have a positive impact on my cognitive function. After almost 3 years on Nebido, I had hoped that my cognitive function would have improved but it hasn’t. Some days I can’t even think of the right name for basic objects or search for something on YouTube (not a critical skill, I know) so perhaps HCG is the answer and I won’t know if I don’t at least try it.

Think micro-dosing might be the way to go given my polycythemia issue so will try to find the article. Is self-administering more of a mindset thing that gets easier the more you do it? I’m fine with needles but must admit I’m slightly concerned about the whole intramuscular thing rather than subcutaneous, which I assume is easier?  

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11 hours ago, mearbhall said:

OK, so purely from a cost to the NHS point of view, even if Test E was £20 per 250mg/1ml vial it would still be quite a bit cheaper than the cost of Nebido over the course of 10 -12 weeks? I thought it was going to be a lot more expensive.

Guess you already know how difficult it is to find an endo that has the first idea about TRT, and is prepared to move away from Nebido, but when you throw hypothyroidism and haemochromatosis into the mix, there really is no point looking.

Regarding HCG I am just curious to see whether it would have a positive impact on my cognitive function. After almost 3 years on Nebido, I had hoped that my cognitive function would have improved but it hasn’t. Some days I can’t even think of the right name for basic objects or search for something on YouTube (not a critical skill, I know) so perhaps HCG is the answer and I won’t know if I don’t at least try it.

Think micro-dosing might be the way to go given my polycythemia issue so will try to find the article. Is self-administering more of a mindset thing that gets easier the more you do it? I’m fine with needles but must admit I’m slightly concerned about the whole intramuscular thing rather than subcutaneous, which I assume is easier?  

Have a look at this article article about the  Benefits of using HCG. I am not sure you’d get improvements in cognitive function from taking HCG. It’s primarily for fertility etc (but I am not a doctor so don’t take my word for it)
 

if you manage to get TRT on the NHS and you got prescribed 100mg a week for example, and you split that into 50mg 2 x a week. Neither you or your GP are going to want to see each other twice a week, for life. Just wouldn’t make sense. So self administering at home is the logical option here. 


A few weeks of prepping and injecting your own injections and you’ll be set, It’s daunting at first but it just becomes routine. Generally IM for test.
SubQ for HCG. Difference is in location of injection, into muscle or fat, therefore you can use different needle sizes as necessary and there are arguments/discussions on absorption, post injection pain and comfortability. (I do IM ventrogluteal and subQ HCG, Basically painless) 

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On 6/23/2020 at 4:10 AM, Pez189 said:

Hey. Sorry to hear of your health issues. Bearing them in mind, if you decide to go non NHS, Id argue you’d be best to have private TRT, rather then using UGLs etc.  You’d probably benefit from a professionals guidance in regards to it all. 

I’m with Dr savage. Just to make you aware that while Covid is among us, you don’t have to go to the clinic for a consultation And everything can be done over the phone. He’s a good guy. He managed to get my GP on board for blood tests and the two of them can have some dialogue if necessary. That May be beneficial to you in discussing other medical concerns etc. 

Also in terms of costs, obviously I don’t know how you define “affordable” but some guys come on here thinking TRT costs £1000’s a year. And sure it can be £1k+ depending on which provider you go with, but I’m paying  significantly less than what I first expected. Costs me about £30 month (membership/sustanon), £50 month with HCG (and you probably won’t require HCG tbh unless fertility/ball size is of concern). 
 

Good luck with whatever you decide. 

Have spoken with Dr S and he is going to write to my GP to ask him to prescribe Test Enantate (although he originally suggested starting with Sustanon).

He knows his stuff but is it odd that The Mens Health Clinic describe Test Enantate or Cypionate with HCG as their first choice of treatment and the 'gold standard' and are not keen on Sustanon whereas it was the first option with Dr S? Or is that just down to NHS training i.e. prescribe the cheapest option first?? Either way, it's great that you can have a conversation with him and unlike any of the endos I've been to he actually listens and talks things through, hence the switch to Test E.

Anyways, if my GP plays ball it's either 0.25ml twice a week or 0.5ml once a week for 6 - 8 weeks, get bloods done and if all is well start on HCG. Should know by the end of the week.

Is HCG fairly easy to get hold of now as I see on a few forums there seemed to be a supply issue?

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1 hour ago, mearbhall said:

Have spoken with Dr S and he is going to write to my GP to ask him to prescribe Test Enantate (although he originally suggested starting with Sustanon).

He knows his stuff but is it odd that The Mens Health Clinic describe Test Enantate or Cypionate with HCG as their first choice of treatment and the 'gold standard' and are not keen on Sustanon whereas it was the first option with Dr S? Or is that just down to NHS training i.e. prescribe the cheapest option first?? Either way, it's great that you can have a conversation with him and unlike any of the endos I've been to he actually listens and talks things through, hence the switch to Test E.

Anyways, if my GP plays ball it's either 0.25ml twice a week or 0.5ml once a week for 6 - 8 weeks, get bloods done and if all is well start on HCG. Should know by the end of the week.

Is HCG fairly easy to get hold of now as I see on a few forums there seemed to be a supply issue?

If you can get test E prescribed on the NHS, happy days :) Is NHS test E 250mg strength?... So you’ll be doing 125mg a week to start with? 
 

Did you ask Dr savage why his “standard” is different to what TMHC offer? Im Not sure why he has a preference to Sustanon over test E or C initially. I think a lot of it is cost driven, as he knows most will be paying privately and it’s considerably more so if people can be happy on sust long term, then financially it’s the better solution.  That’s said, After doing my homework, I’d much rather be on a Single Ester compound than Sustanon but can’t afford it privately. I Would have to use a UGL and stop private TRT. 
 
Regarding HCG, in my experience, no its not easy to get hold of, atleast privately. I was supposed to be on it from the start, Dr savage wrote me a prescription but I couldn’t find it in stock anywhere, other then one online pharmacist but it was Damn expensive. £150 for 20 weeks. Im now using some I got from a UGL for almost half that price and it’s the same stuff. Im on the understanding you can not get it through the NHS so your options: expensive online pharmacist (unless you a manage to find somewhere that has in stock reasonably priced), or UGL.

 

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4 hours ago, Pez189 said:

If you can get test E prescribed on the NHS, happy days :) Is NHS test E 250mg strength?... So you’ll be doing 125mg a week to start with? 
 

Did you ask Dr savage why his “standard” is different to what TMHC offer? Im Not sure why he has a preference to Sustanon over test E or C initially. I think a lot of it is cost driven, as he knows most will be paying privately and it’s considerably more so if people can be happy on sust long term, then financially it’s the better solution.  That’s said, After doing my homework, I’d much rather be on a Single Ester compound than Sustanon but can’t afford it privately. I Would have to use a UGL and stop private TRT. 
 
Regarding HCG, in my experience, no its not easy to get hold of, atleast privately. I was supposed to be on it from the start, Dr savage wrote me a prescription but I couldn’t find it in stock anywhere, other then one online pharmacist but it was Damn expensive. £150 for 20 weeks. Im now using some I got from a UGL for almost half that price and it’s the same stuff. Im on the understanding you can not get it through the NHS so your options: expensive online pharmacist (unless you a manage to find somewhere that has in stock reasonably priced), or UGL.

 

I sent a link to the Leger Clinic website over to my GP last week and he's just emailed to say he's "done some research on TRT and Dr S and he seems ahead of the crowd".  He then told me to make an appointment with him and that whatever he is permitted to prescribe on the NHS - which rules out HCG & Clomid - he will do his best to prescribe. Sounds hopeful but as my local CCG are a complete pain in the a*** when it comes to prescribing anything not on their Formulary it could go either way! If it comes to that there are only three options available, Testogel, which I tried for 5 months, Nebido, which I've been on for almost 3 years or Sustanon. Guess it could be worse, so should be grateful there's at least another injectable testosterone!

On the NHS NICE website there are just three manufacturers listed (but I think they are all part of Alliance Pharmaceuticals) for 'Testosterone enantate 250mg/1ml solution for injection ampoules' and you get 3 ampoules in a pack. He said 0.5ml once a week or 0.25ml twice a week so I guess that's 125mg every 7 days or 62.5mg every 4 days? Sounds a lot or is that likely to be just a starter dose until levels get dialled in?

No I didn't ask him as he had no objection to prescribing Test E. It's not that I have anything against Sustanon but as I have so much other s*** going on, and my thyroid levels are finally where they need to be, I would prefer to keep my TRT as simple as possible so I can essentially track the cause and effect of whatever testosterone compound I take. For me that means a single ester like Test E rather than a mix of esters such as Sustanon. 

I am waiting for the fertility website Dr S suggested for HCG to come back to me regarding stock and cost as they seem to be the only place with it 'in stock', but that's only according to their website. How do I find a legit UGL if I need to go down that route in the future?

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14 minutes ago, mearbhall said:

I sent a link to the Leger Clinic website over to my GP last week and he's just emailed to say he's "done some research on TRT and Dr S and he seems ahead of the crowd".  He then told me to make an appointment with him and that whatever he is permitted to prescribe on the NHS - which rules out HCG & Clomid - he will do his best to prescribe. Sounds hopeful but as my local CCG are a complete pain in the a*** when it comes to prescribing anything not on their Formulary it could go either way! If it comes to that there are only three options available, Testogel, which I tried for 5 months, Nebido, which I've been on for almost 3 years or Sustanon. Guess it could be worse, so should be grateful there's at least another injectable testosterone!

On the NHS NICE website there are just three manufacturers listed (but I think they are all part of Alliance Pharmaceuticals) for 'Testosterone enantate 250mg/1ml solution for injection ampoules' and you get 3 ampoules in a pack. He said 0.5ml once a week or 0.25ml twice a week so I guess that's 125mg every 7 days or 62.5mg every 4 days? Sounds a lot or is that likely to be just a starter dose until levels get dialled in?

No I didn't ask him as he had no objection to prescribing Test E. It's not that I have anything against Sustanon but as I have so much other s*** going on, and my thyroid levels are finally where they need to be, I would prefer to keep my TRT as simple as possible so I can essentially track the cause and effect of whatever testosterone compound I take. For me that means a single ester like Test E rather than a mix of esters such as Sustanon. 

I am waiting for the fertility website Dr S suggested for HCG to come back to me regarding stock and cost as they seem to be the only place with it 'in stock', but that's only according to their website. How do I find a legit UGL if I need to go down that route in the future?

Sounds like your GP is one of the rare ones that might actually be helpful in regards to this stuff. Keep hold of him for sure. You’re right to stick With a single ester compound if you can. 

Injecting Twice a week Is very common, mon and thurs 62.5mg would do you well. Obviously you’ll have to review bloods after say 6 weeks to see how you get on with it. 
 

Im assuming pharmacy 2 u? If so, I sent my HCG prescription off to them and after 4 weeks Of Them messing me around and waiting for them get it in stock (despite being in stock according to the website), they eventually sent the prescription back saying they were having stock issues with it. Fertility 2 u will have it but they’re expensive. 

 

 

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17 minutes ago, Pez189 said:

Sounds like your GP is one of the rare ones that might actually be helpful in regards to this stuff. Keep hold of him for sure. You’re right to stick With a single ester compound if you can. 

Injecting Twice a week Is very common, mon and thurs 62.5mg would do you well. Obviously you’ll have to review bloods after say 6 weeks to see how you get on with it. 
 

Im assuming pharmacy 2 u? If so, I sent my HCG prescription off to them and after 4 weeks Of Them messing me around and waiting for them get it in stock (despite being in stock according to the website), they eventually sent the prescription back saying they were having stock issues with it. Fertility 2 u will have it but they’re expensive. 

 

 

Would you say it is best to start with once a week or twice a week - twice a week sounds like the peaks wouldn’t be too high and the troughs wouldn’t be too low but not sure if that’s the reality?

 

It was Fertility2u. Dr S said it worked out around £30-£40 per month for Gonasi so that pretty much equates to £150 for 20 weeks.

Any chance you can give me a steer on where to find it cheaper, or is that not allowed on here?

 

 

 

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12 minutes ago, mearbhall said:

Would you say it is best to start with once a week or twice a week - twice a week sounds like the peaks wouldn’t be too high and the troughs wouldn’t be too low but not sure if that’s the reality?

 

It was Fertility2u. Dr S said it worked out around £30-£40 per month for Gonasi so that pretty much equates to £150 for 20 weeks.

Any chance you can give me a steer on where to find it cheaper, or is that not allowed on here?

Theres a lot of advantages to micro-dosing and alot of clinics like TMHC for example swear by it and it’s pretty common practice. Get the go ahead on what to do from dr savage though, I’m not a doc so wouldn’t wish to advise tbh but I’d go with twice a week, and indeed I am, but with Sustanon. 
 

HCG can be found cheaper from UGLs but yeah it’s against the rules unfortunately to discuss them here. 

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36 minutes ago, Pez189 said:

Theres a lot of advantages to micro-dosing and alot of clinics like TMHC for example swear by it and it’s pretty common practice. Get the go ahead on what to do from dr savage though, I’m not a doc so wouldn’t wish to advise tbh but I’d go with twice a week, and indeed I am, but with Sustanon. 
 

HCG can be found cheaper from UGLs but yeah it’s against the rules unfortunately to discuss them here. 

He said he’s going to send me info on doses in the post along with instructions for giving injections so, as you say, I’ll see what he’s prescribed and take it from there.

Had a look at a few yesterday and prices were consistently around £25 for 5000iu. Is that around ballpark or should I look harder?

And I guess there’s no real difference from brand to brand? Bayer, Ogivil, Organon, Magnus and SP all seem to be generally available but haven’t seen Gonasi anywhere.

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7 minutes ago, mearbhall said:

He said he’s going to send me info on doses in the post along with instructions for giving injections so, as you say, I’ll see what he’s prescribed and take it from there.

Had a look at a few yesterday and prices were consistently around £25 for 5000iu. Is that around ballpark or should I look harder?

And I guess there’s no real difference from brand to brand? Bayer, Ogivil, Organon, Magnus and SP all seem to be generally available but haven’t seen Gonasi anywhere.

About £18-25 is a typical UGL price. Not sure about differences between brands Tbh, obviously some are more reputable than others and you can come to a consensus about them through researching. If a UGL has a good reputation then arguably they aren’t gona stock rubbish. I’m currently using Bayer ovidac. 

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