thyroid levels and ataxia and serum protein advice please

[Happysmile]

Hi, I’ve previously posted and been told my thyroid results are too low, but my private endocrinologist refuses to increase my erfa, due to my (expected) suppressed tsh.

I have recently being diagnosed with osteoporosis, raised blood serum protein levels (could be an indication of myloma) and was investigated for stroke/tia, as I had an episode of ataxia. Results were all okay except they picked up on my low t3/t4 and high cholesterol. The hospital asked for a review by an endocrinologist who by phone said my graves could have come back (???) but they now keep refusing to see me as I am prescribed ndt privately and say the gp can manage me if I go back to taking Levo.

I feel sure my high cholesterol(total 6.6 mol/l then 6.7 when fasting) may be caused by my thyroid, as I eat sensibly and have a healthy lifestyle.

My last tsh was -0.1 mu/l, t3 4.8 (3.9-6.8) and t4 11.8 pmol/l (11-24). This was a while ago but they are all similar results and I’m trying to get my latest hospital results.

I’m trying to find answers but struggling as no one is looking at the bigger picture.

1. do you think my t3/t4 is too low? If so, can my tag go even lower if I were to find someone to increase my erfa?

2.do you think my cholesterol is caused by low thyroid?

3. does anyone know if thyroid issues can cause osteoporosis or raised serum protein/myloma?

I don’t know whether to stop erfa (which I feel good on) and try levo again, (now that I have started HRT and felt generally better ) in an effort to raise my TSH or try and find someone else to guide me with the erfa?

(Any private messages about really good private ENDO’s or even nhs ones in the southwest who prescribe ndt, would be appreciated).

Interestingly, I was advised by a separate and very knowledgeable bone specialist that a suppressed tsh could be setting off alarm bells for other cells etc in my body and causing other systems to malfunction. Can this be true?

Feeling really frustrated as I know any NHS endocrinologist will advise against ndt (as is their remit) and private ones will be concerned about tsh being too suppressed. What do I do?

[greygoose]

FT3: 4.8 pmol/l (Range 3.9 - 6.8) 31.03%

FT4: 11.8 pmol/l (Range 11 - 24) 6.15%

1. do you think my t3/t4 is too low? If so, can my tag go even lower if I were to find someone to increase my erfa?

Absolutely, yes. Euthyroid - i.e. no thyroid problems - the Frees are usually around 50%, but hypos usually need them a lot higher than that. Yours are very low.

2.do you think my cholesterol is caused by low thyroid?

By that low FT3, yes, definitely.

3. does anyone know if thyroid issues can cause osteoporosis or raised serum protein/myloma?

I don't know anything about raised serum protein but it wouldn't surprise me if there was a link. Osteoporosis definitely can caused by low T3, yes. There's was a post about it a couple of days ago, with interesting links.

I was advised by a separate and very knowledgeable bone specialist that a suppressed tsh could be setting off alarm bells for other cells etc in my body and causing other systems to malfunction. Can this be true?

Pretty certain it's not true. As far as I know, the TSH only has two jobs: to stimulate the thyroid to make more hormone, and to activate the deiodinase that convert T4 to T3. If your TSH is low/suppressed it's because your pituitary has decided you don't need it anymore. If it had an effect on other systems in the body, I don't think this would happen. It's not logical.

On the subject of ataxia, I find that CBD oil works wonders for mine.

[Happysmile in reply to greygoose]

Thank you so much. I’ll look for the post you mentioned. Now to find a better specialist.

[greygoose in reply to Happysmile]

You're welcome.

[Happysmile in reply to greygoose]

Are you able to help me with any literature on where your levels of T3 and T4 should be when on NDT please? I’d be keen to read and understand where I should be in the range and the TSH too. Thank you.

[greygoose in reply to Happysmile]

No, sorry, I can't help you with that because it doesn't exist. It's not about the numbers, it's about how you feel. If you feel good then the numbers are right. If you feel bad then they're not right.

The idea is to keep slowly increasing until you do feel good. If you aim for any particular number, and when you get there you still feel bad, it's going to be a terrible disappointment for you, so best not to do that.

Some people do talk about the FT4 should be this or that and the FT3 the other, but I prefer to say that most people feel best when their FT3 is in the upper third of the range, but we're all different. And because we're all different, the FT4 is going to vary a lot from person to person. Some people need it quite high, others don't need it at all and are good on T3 mono-therapy.

As for the TSH it's more than likely that on a decent dose of NDT, even if it's not quite high enough for, the TSH is going to be low because of the T3. It doesn't matter. A low/suppressed TSH is never a problem for the patient, only for the doctor, because he doesn't understand how it all works.

[Happysmile in reply to greygoose]

Thanks, makes sense. Can I ask a basic question I should know the answer to? If your thyroid is removed, your pituitary gland will still release TSH, right? Presumably at an increased rate if your thyroid isn’t producing T4? So should your TSH production be high and it then reduces once t3/t4 is added, as in Erfa? I appreciate it’s basic stuff but just need to get my head round it

Also, if TSH activates the deiodinase that converts T4 to T3, TSH is only needed with a normal working thyroid or someone taking Levo? Because with Erfa, there is already T3 in the body?

Lastly, why TSH figures go into negative when on NDT? Surely it should stop at zero?

Any thoughts to educate me before my GP appointment are appreciated , thank you

[greygoose in reply to Happysmile]

You're absolutely correct on the first two points, but I don't understand what you mean by the TSH going into negative figures. I have never seen a blood test sheet with a minus TSH. 0.00 yes, but I can't see how a minus number could even be calculated. Can you give me an example?

[Happysmile in reply to greygoose]

Okay makes sense. Sorry, I was thinking my tsh was -0.01 but it wasn’t minus, in fact 0.01. Apologies. So my pituitary gland isn’t pushing out any tsh really because I take T3. Does that mean the t4 I take can’t be converted to t3?

[greygoose in reply to Happysmile]

No problem.

Your pituitary isn't making TSH, to all intents and purposes. But how much you can convert without it seems to vary from person to person. To find out if and how much you're converting you'd have to be on T4 mono-therapy for a while. And I don't think you want to do that!

[Happysmile in reply to greygoose]

agreed. Thanks again.

[greygoose in reply to Happysmile]

You're welcome.

[Jazzw]

How much Erfa do you take?

[Happysmile in reply to Jazzw]

1.5 tabs in the morning. 2 in the evening.

[Jazzw in reply to Happysmile]

Erfa comes in different strengths though. Are you saying you take 210mg a day in total—90mg in the morning, 120mg at night?

[Happysmile in reply to Jazzw]

Sorry just checked, they are 30 mg tabs (half a grain), so 45 am and 60 pm.

[Jazzw in reply to Happysmile]

Right. So that’s not actually a large amount of Erfa—in the region of 1 and three quarters of a grain per day.

Which is very possibly the issue here. It’s troubling that your endo is fixated on TSH given your original Graves diagnosis AND the fact you now take a medication that contains T3, which tends to suppress TSH even at fairly low doses. That suggests they don’t really know their stuff.

I think I’d be looking to find a more informed endo in your position, or even potentially going it alone (self sourcing your NDT). I think you’d probably benefit from an increase in dosage.

[Happysmile in reply to Jazzw]

Thanks, I’m looking around for an endo that can prescribe erfa.

[GlowCoach Administrator in reply to Happysmile]

We arent allowed to name Endo's in the group but do start a new post asking for one that can prescribe Erfa and ask for replies by personal message.

[Happysmile in reply to GlowCoach]

Thank you, I appreciate they would have to be by personal message.

[humanbean]

Ataxia may be caused by low vitamin B12 and/or low folate. Have you had either of these tested in recent months? If yes what were the results and reference ranges. Are you taking any supplements for these? If yes, what are they?

b12info.com/signs-and-sympt...

pubmed.ncbi.nlm.nih.gov/235...

pubmed.ncbi.nlm.nih.gov/346...

Edit :

en.wikipedia.org/wiki/Ataxia

I have ataxia although it isn't caused by B12 or folate deficiency, but I have found that eating gluten makes it worse.

[Happysmile in reply to humanbean]

Hi I have pernicious anaemia and self inject 3-4 times a week as it was discovered quite late stage. I don’t eat gluten as have anaphylactic allergies to wheat and nuts. I ask them not to test my b12 but when they did my folate was in range (they only test b12 and folate together in my trust). I do take some folate but not too often as my results have always been mid to high range. I take bcomplex once a week and d3/k2 and magnesium daily. Also vit c once or twice a day and l lysine daily. The ataxia came out of the blue after a stressful week being told about possible myloma etc. I wonder if stress caused it.

[jgelliss in reply to humanbean]

Very interesting humanbean.

[humanbean]

Referring to your slightly high cholesterol...

Did you know that back in the early 90s the top of the range for Total Cholesterol was 7.5? It changed to 5 in the late 90s when Big Pharma wanted to sell statins. When the change in range was made in the UK it immediately made over half the population suddenly get told they had high cholesterol when it had never been mentioned before.

And I strongly suggest you study the graphs in this link :

drmalcolmkendrick.org/2012/...

The left hand graph shows that mortality for women decreases the higher their cholesterol.

Doctors usually refer to heart disease or cardiovascular disease when trying to persuade people to take statins. But people don't just die of heart disease or strokes they may die of cancer or dementia/Alzheimer's Disease. And statins increase the risk of developing Type 2 Diabetes which also increases the risk of dementia/Alzheimer's Disease. And statins can increase the risk of developing some cancers.

Oh, and although not deadly, statins increase the risk of developing cataracts.

Personally, although I have high cholesterol I don't care about it at all.

[Happysmile in reply to humanbean]

Thanks for this. I was aware the ranges have reduced, but not by how much, and am not surprised it’s to do with statins, as I am of the belief that doctors are paid to prescribe statins. I guess it’s the bad cholesterol that is important and whether my thyroid replacement isn’t being adequately treated and causing high cholesterol that is worrying me.

[humanbean in reply to Happysmile]

I thought you might like to read this picture. I've posted it on the forum before.

Cholesterol and triglycerides

[Marz in reply to humanbean]

As Dr Kendrick said at the TUK Conference - "as Cholesterol is a chemical, it cannot be both good and bad !!"

[Happysmile in reply to humanbean]

good poster 👍

[Cincolo]

1. Low TSH and low Free T4 can be a sign of a pituitary problem. If you increase it, yes, your TSH will decrease more. I am confused though, if you have/had Graves, you should be on a different type of medication. That could be causing your problem. I take it you have Hashimoto's as well?

2. Being at hyper levels can cause osteoporosis.

3. Typically being hypo causes cholesterol levels to increase. Your Free T4 does. Your Free T3 could be higher (around 5.5). Your levels were similar to mine recently (I'm on T4/T3). My TSH dropped and Free T4 was lower than midrange, but I had also had 4 CTs with contrast in the past year. Dr. cut my T3 in half-which I knew would "kill" me (my T3 was not out of range but in the higher end), and I was exhausted half the day. Found a new doctor and increased it to 3/4 what I was taking before. Feel better now. You are on T4 only though, correct?

4. I believe HRT can causes levels to increase (hypo). Maybe that is figuring in here.

[tattybogle in reply to Cincolo]

looking at previous posts , Happysmile had graves , treated by total thyroidectomy, healthunlocked.com/thyroidu... so switching to antithyroid drugs ( carbimazole /PTU) would not be appropriate .

[Happysmile in reply to Cincolo]

Hi, I’m on erfa, t3 and t4. Just in different proportions to the human thyroid version. As tattybogle kindly confirmed, I am under active, after a total thyroidectomy 30 yeas ago. HRT has been fairly recent, but I do feel better on it.

[Poniesrfun]

Why are you taking lysine? That could be the cause of your elevated protein

Patti in AZ

[Happysmile in reply to Poniesrfun]

Hi, is there a link? I can’t find one but would be really interested to know. I take it as it prevents cold sores for me. The only thing that works.

[Poniesrfun]

I asked GPTChat - chatgpt.com/share/6789647f-...

Apparently it won’t independently cause elevated protein levels and can be effective for herpes virus. I considered it might based on as an essential amino acid, it can improve overall protein levels and that it’ doesn’t help herpes virus in cats (and can actually make it worse).

Examine.com has an interesting writeup on cold sores. examine.com/conditions/cold...

Patti in AZ

[Happysmile in reply to Poniesrfun]

thanks, I’ll have a read. It works brilliantly for me for cold sores if u don’t take it they come back sadly.