I have been visiting my NHS/Private endo now for over a year with consistently borderline low/normal T3, T4 and TSH. TSH doesn't always seem to move correctly to balance T4. I have had every classic hypothyroid symptoms over 4-5years, some transiently severe. Parents and grandparents all on levothyroxine since around 45yrs old with the same symptoms. I am 49. Now I also struggle with chest pain and breathing problems. It has been so severe I have been ambulanced in twice for fear of heart attack. My GP is listening to my Endo, who has asked my GP for every other test under the sun to rule out other diseases. All negative.
My endo is aware of all of this and still refuses to prescribe levothyroxine saying that if I start taking it then any thyroid hormone I have left will be destroyed. He thinks my body with learn what it needs. He is a professor in his field so difficult to argue with. I can't find any information on this anywhere. Is he full of it?? Or does he have a point?
Thank you for any response.
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flutterbylion
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I’m sorry I can’t offer you an informed response but thank you asking this question. I fully expect to be diagnosed with sub-clinical hypothyroidism after my next blood test and my instinct (for the reasons your endo gives) is to put off having to take Levo for as long as I can, but I sympathise as some relief from symptoms would be so welcome. A crutch for a limping thyroid or notice to shut down - it’s so hard to know.
I’m sorry to hear you are struggling with chest pain and breathing problems - I’m not a clinician so won’t speculate about probable causes but hope you can get to the bottom of what’s going on. Will follow this thread with interest.
Hi Marz, everything normal with adrenals, Thanks. I was hoping for TRH testing, but that has still not happened. I'll post thyroid results shortly. My money has always been on Central, but still have some T3/T4 so Endo's moto is 'do no harm' translated to 'do nothing' unless blazingly obvious.
If you have Hashimoto’s, or have inherited DNA issues that affect thyroid and/or pituitary or HPA axis it’s not likely that thyroid will increase output. Thyroid disease has strong genetic links through families
It’s true that once you start on levothyroxine your thyroid will take a rest. Then you need levothyroxine dose slowly increased, until eventually your own thyroid output is switched off. so once on levothyroxine, it’s almost always for life
But if your thyroid isn’t working correctly, or message from pituitary is unreliable then you are going to need to start on levothyroxine
It’s a replacement hormone, replacing your own because you don’t have enough
First thing is, do you have any actual blood test results?
if not will need to get hold of copies
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Have you had BOTH thyroid antibodies
Have you had vitamin levels tested
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
Hi, thank you so much for your advice. I am aware and have been following most of it from reading your posts before.
These are test results from Jan- Dec 2019
T4/TSH range 12-22/0.27-4.2
14.4/1.29
13.1/1.3
14.5/1.24
13.8/1.21
13.7/1.86
12.5/2.11
T3 hovers around 4 range 3.1-6.8
Antibodies never higher than 12.
Awaiting blood tests this month.
I have visited Neuro for MRI due to excruciating nerve pain at night, and Cardio and all normal. I had ECG changes on my hospital visits re chest pain and they have been put down to Acute Pericarditis. Echo normal. But cardio seemed a bit unsure, especially as I am still having chest pain and breathlessness.
Gluten free diet has helped somewhat, but difficult to maintain as I am also vegetarian.
Today I have looked through more of my results looking for anything that stands out as unusual. My vitamin D constantly goes back down to severe deficiency if I don't take 4-8000iu daily. B12 keeps dropping back too. All others seem stable.
Looking at my last bloods I see GFR 60 creatinine 84.
I'm thinking that sounds low. In Jan GFR was 90 and creatinine 64. So bit worried there.
Supplementing for at least 9 months Vit D from GP 6 week loading dose(50000iu 1x weekly), followed by D3 1000iu x1 daily, numbers dropped again after several months, so loading dose again, then 1 x 4000iu daily as advised. Taking that since November.
Current test results 7th December 2019.
B12 supplements did not work. Tried patches, then sublingual B12 6000mcg 1xdaily. That works.
Selenium 200mcg x1 daily.
Taking recommend daily dose of these in a multi vitamin -
Iron, thiamin, riboflavin, niacin, folic acid, B6, vit C.
Most recent results whilst taking supplements-
B12 - 441 (191-693)
Folate - 11.3 (3.3-19.3)
Vit D - 68
Ferritin 27.8 (13-150)
Thyroid peroxide anti 12klU/L
No recent TG antibodies, so will have to get that checked again.
I was taking Magnesium with zinc and calcium but after a while couldn't swallow the large tablets. Probably the calcium. I will try for Magnesium alone.
The D3, and multivitamin contain Magnesium stearate so I assume I am getting a small amount through that.
I will try to improve Ferritin.
I'm concerned how much more vit D I can safely take especially seeing a dropping GFR. It feels like I'm filling a bucket with a hole in. There's confusing information on kidney issues and vitamin D, so am I going to cause more damage by increasing D even more ? Would it be better to push for improved thyroid hormone levels first?
Seems reasonable to think that the thyroid can, at least sometimes, increase its output. After all, we see people with Graves' disease going from perfectly acceptable thyroid hormone levels to massively hyperthyroid. Or some thyroid nodules.
But the obvious question is: Why is your thyroid not already putting out more thyroid hormone?
Followed by: What damage is being caused to you by trying to survive on inadequate thyroid hormone?
I think it is fair to say that we only have a partial picture of the factors which change the thyroid's ability to make thyroid hormone. There are the well-known issues like needing sufficient iodine and tyrosine as ingredients, and selenium to form the enzymes used in so many steps of thryoid metabolism. But after them, what?
If: We do not know the factors AND nothing is being done to change these unknown factors AND the issue is not resolving over years, is he just going to leave you suffering forever? (Pretty obvious that if the factors are unknown, no-one can know what to change. All sorts of things could be tried. Sounds as if not even random guesses are being applied as any form of treatment.)
Let us suppose that a high TSH would trigger your thyroid into being able to produce more thyroid hormone. Then you have told us that the TSH doesn't move correctly. That could indicate the pituitary being the problem. People with hypothyroidism sometimes have enlarged pituitaries (so-called pituitary hyperplasia) - seemingly trying to make more TSH.
But a significantly enlarged pituitary can itself cause problems.
Just waiting for the pituitary to be able to produce enough TSH seems a particularly rotten approach.
And if your brain is not producing enough TRH to stimulate the pituitary to produce mode TSH, what then?
Thank you for your response. There is certainly history of pituitary or hypothalamus involvement causing TSH deficiency in the family. Endo says genetics are very rare in pituitary cases so shrugged that off pretty quickly. However he did initially recommend TRH testing but has not followed through. I've been to the last 2 appointment expecting it to happen, for him to turn me away for a reason or another.
It is entirely illogical to say that you do not have something on the grounds of it being rare.
How rare something is might have value in deciding exactly how to diagnose. But you could be the only person on the planet with some particular issue. Certainly that does not mean you do not have it.
Hi, thank you for sharing. I have wondered if it could be panic/anxiety. But I have not felt anxious - not even when it was happening. My endo has been helpful in many ways. I started with him privately, and chose him because he seemed well aware of thyroid issues. I may have chosen wrongly, but he did immediately pick up on severe vitamin deficiencies - B12, ferritin and D. D was lowest at 25. Got the GP to prescribe and carry out tests that they probably wouldn't have otherwise. I do worry that the Professor title means he doesn't really have time for me. It's also meant long waiting times between appointments.
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Oh dear another medic who , I guess, doesn't really understand thyroid disease particularly when patients are at a point when they do not respond to levothyroxine.
But!
This "expert" isn't even prepared to offer you a trial of levo to find out how/if you respond, despite the fact that both your symptoms and your genetic/family history point to that as a way forward. Would he rather just leave you suffering meantime!
Being a prof doesn't mean that he has all the answers, it sounds as if he is winging it!
" He thinks my body will learn what it needs"....sorry, but did he achieve his degree in Cloud Cuckoo Land because it sounds as if that is where he resides. Just my opinion!
Having knowledge of only part of thyroid disease doesn't an expert /prof make! He is probably a diabetic specialist.
I am a cynic re medics and thyroid disease ( with justice!) having suffered from their inability to correctly diagnose and treat for decades what turned out to be a complex thyroid issue. I wish I'd known what I now know at least 50 years ago.
If thyroid disease was treated properly there would not now be over 100,000 people on this forum, all unwell and all desperate for help.
I take it you have a list of thyroid symptoms but if not....
Slowly decreasing low T3 over (possibly) a lifetime caused my health to very slowly decline until I could barely function. This only came to light at the age of 70 when I joined this forum....and found the real experts.
"Tests all negative"....been there!
In your shoes, to begin with I would be building a case for a trial of levo, presenting it to this poor confused guy and politely but firmly asking him to be open minded and to offer levo then watch and see what happens! He is only human not a deity!
Trouble is he probably doesn't know how to do that effectively!
That is where the experienced members on this forum will guide you forward.
Alternately you could arrange for private blood tests the results of which will give members here the information to offer help...but I see SlowDragon has offered you full details and excellent advice.
Members really need these test results along with the ranges
You will get all the support and advice here to help you learn and to guide you forward....I can vouch for that
Your 'specialist's' opinion is totally illogical. As he doesn't even know what is wrong with your thyroid, how can he possibly know that it is going to 'learn' to make more hormone? (And there is so much basically wrong with that idea that I won't even attempt to go into it.) Given that he is a 'specialist' he ought to know that starting to take thyroid hormone is not going to close down your thyroid permanently. It will stop making the little hormone it does manage to make at the moment, that's true. But, if you were to stop taking the exogeneous hormone, for whatever reason, the thyroid would just pick up where it left off and start making the same amount of hormone again. As much as the TSH is telling it to make, that is.
So, what testing has he done to rule out Central Hypo? Does he actually admit the possibility of Central Hypo?
Many cancelled appointments by them, or poorly informed registrars, so it hasn't happened. Had blood tests for other pituitary related functions - all normal.
Originally I was private, and he said TRH would be better covered on NHS, so referred me to his own NHS clinic in May last year. Still hasn't happened. He did admit the possibility of Central Hypo. to offer the test. There are guidelines in BMJ Best Practice so he can't deny it. I understand that the testing has risks as well though, so I'm considering pushing a trial of Levo through GP instead.
Why would the TRH test be better covered by NHS? Is it that expensive? As it doesn't look like you're going to get it through the NHS, it might be worthwhile doing it privately, no? On the understanding, of course, that it would lead to levo being prescribed.
I'm afraid I don't know anything about the TRH test. How is it done? Is it a blood test?
TRH testing can be used if TSH is unreliable. I suppose it tests TSH. It is used to distinguish between the various thyroid states and hypothalmic/pituitary dysfunction. It involves receiving injections of Thyrotropin Releasing Hormone and assessing how TSH reacts at timed intervals.
I understand it's no longer used in the US as it's considered unsafe. Hence my concern. However -without it, how else can we know what's going on if an individual's TSH does not work properly ?
TRH stimulates the pituitary to make more TSH. If the pituitary responds then it is not the pituitary at fault, it is the hypothalamus which is supposed to secrete TRH. If the pituitary doesn't respond, then it is the pituitary at fault.
However, that is really academic, because there's nothing that can be done about it in either case. If you have a blood test showing low TSH and low thyroid hormones, then it is important to know if other pituitary hormones are also low, but apart from that, the need for thyroid hormone replacement is obvious from low levels in the blood test and therefore should be given. Talk about testing TRH just seems like delaying tactics, to me. The important issue, really, is why this endo is refusing to prescribe levo despite the evidence that it is necessary.
Thank you for your advice. It gives me strength to push through. At the moment I struggle with keeping track of things too, depression and mental 'fog', so if he starts arguing the point, it's easy for me to lose focus on what I'm trying to push through. Unfortunately I know that's a symptom too. 😟
But I think I can do it by collecting and printing evidence and having it all written down ready.
I'm not sure why he would choose to order this test.....UK or USA!
I would have thought a full thyroid panel would offer most of the information he needed....for a diagnostic test.
TSH, FT4, FT3 vit B12, vit D, folate, ferritin and antibodies
Do you have a copy of the results of your diagnostic (first) test, if not you are legally entitled to ask for a copy. Don't accept a diagnosis of "normal" ....your results do not appear normal.
"with consistently borderline low/normal T3, T4 and TSH."...without the numbers this means very little I'm afraid.
I'm not a medic but "consistently borderline" shouts one thing....hypothyroidism!
The first line treatment should be a trial of levo. His reason for not doing this seems to be nonsense. It may be that you later need to alter your medication protocol, but first steps first.
has already explained why his diagnosis is illogical. Listen to her!
Waiting almost a year for any test smacks of procrastination.....which as we know is "the thief of time". Is he perhaps unsure about his choice of test!
Find a GP who understands basic thyroid diagnosis and treatment, this endo clearly doesn't.
Obtain the results of a full thyroid panel and take it from there....to here, if you want expert advice.
I wouldn't be writing this now if I hadn't eventually found the real thyroid experts...here!
I'm not sure why he would choose to order this test.....
Seems to me it's just another ruse to keep the OP dangling. The bottom line is, he just doesn't want to prescribe thyroid hormone replacement. Quite why he doesn't is somewhat of a mystery. But, probably has a lot to do with ignorance!
Actually, it appears to be a general trend, to diagnose and treat as few people as possible with hypothyroidism, and if you absolutely have to tread them, keep them as under-medicated as possible without actually killing them - give them just enough to keep them alive! It's something I have yet to understand, but I'm quite confident that one day, someone will say something, and the penny will drop. It's hard to fight a problem when you don't know what the problem is…
I believe that he doesn't want to prescribe it. The cost to the NHS is shocking to stay on levo for life, but the cost of all the other investigations and treatments I have received probably outweigh that already! MRI being the most expensive.
I have put my recent test results in the conversation thread - with Slowdragon - if you want to check them out. I assumed they would be visible to all.
The cost to the whole system is shocking when you have people so sick they cannot work, when it could all be righted by a cheap levo pill. It's false economics, but it suits Big Pharma that way.
I did see your results, but I wasn't specifically talking about your results, I was talking in general about diagnosing and treating Central Hypo.
Really, levothyroxine is extremely inexpensive. Around £2 for 28 tablets.
If your dose matches a tablet, that could be about £26 a year. Less than the cost of one GP appointment. (I know there are other costs but the medicine itself really is this low a cost.)
However MRI was not even for pituitary, it was to rule out neurological issues as I had severe nerve pain through my shoulders arms and hands. All ruled out. So would be yet another MRI to check pituitary.
Thank you. I would like to try. I know you can't respond on chat with details but I understand many members have been able to source their own. I would like to know best sources for UK if anyone can share that with me please.
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Is dose wrong or am I going mad?
Please Help
Still not feeling well following RAI in January
My latest Endo letter and need research to dispute TSH only
New to forum - Advice on my test results and diagnosis would be greatly appreciated plus next steps
