I have posted before as my thyroid function is poor but always comes back in range (my TSH never rises even with low levels) so no chance of medication on the NHS (other than statins for high cholesterol which I refuse).
I did some recent tests
TSH 1.95 (0.27-4.2)
T4 14.6 (12-22)
T3 3.5 (3.1-6.8)
I am feeling really tired, have put on a couple of kilos and struggle with hair loss and weak nails. I am post menopausal and take HRT.
I have been taking Magnesium and Vit D spray daily as well as Thyroid Complex by Biocare but I think I need to take more supplements,
I have managed to get my ferritin up to a better level of around 70 after years of taking iron supplements.
I cant afford to go private so am looking for general or specifically thyroid tailored supplements to help boost my thyroid and am hoping for some advice please?
Many thanks
Written by
karlek
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High cholesterol is most often due to low thyroid hormone levels ( T3)
Statins are an unnecessary sticking plaster!
Yes we must optimise vit D, vit B12, folate and ferritin to support thyroid function but if the thyroid gland cannot produce enough hormone then replacement hormone must be added
Your results indicate poor T4 to T3 conversion and ( initially) to increase that you need to be treated with levothyroxine
Your GP is clueless...can you see someone else who maybe more sympathtic and clued up and who understands thyroid function beyond checking TSH.
We are all different with different needs ....unlike machines which can all be calibrated to a set point.
Medics treat us like machines and it's not working!!
Sorry I'm ranting again but I feel very strongly about the appalling treatment meted out to suffering patients.
Have you thought of complaining to your Practice Manager because this GP is doesn't appear to be following the medic's code of, " First do no harm". He is leaving you suffering with symptoms when he is in a position to help.
Within their guidelines they have some scope to exercise discretion and professional judgement.
Before taking supplements I'd see this, or another GP and ask to have the decision reviewed on the grounds I've explained above.
I'm not a fan of thyroid supplements but this refers to them
Your free’s are on the low side. For many that could be OK. I am not even sure how much of a reliable marker frees are either as many years ago my frees looked good, but I experienced the exact same symptoms that lead to my recent diagnosis.
Putting aside your TSH, if you believe you have hypothyroidism and certainly secondary hypothyroidism where the TSH doesn’t respond to the frees, then your best bet is talking to a more understandable GP and request a trial of levothyroxine or pursue treatment options within private health if at all possible.
It’s worthwhile to caution that your symptoms may not be as a result of hypothyroidism as so many of it’s symptoms mimic other ailments.
In that case, the problem is not with your thyroid, and nothing you can take will make it produce more hormone. The problem is with your pituitary which, for some reason, is not responding correctly to the low levels of thyroid hormone in your blood, and is not producing enough TSH - Thyroid Stimulating Hormone - to stimulate your thyroid to make more hormone. Your thyroid cannot make thyroid hormone without that stimulation.
In fact, Thyroid Complex by Biocare might be making things worse! It contains iodine and tyrosine, the two ingredients of thyroid hormone (and that is all they are, they are not magic potions to make your thyroid work harder), and your thyroid is probably saturated with them without being able to use them because it can't make hormone. You can add as many eggs and flour to the batter as you like, but if the electricity has been cut off, you're not going to get a cake. This supplement is just a glorified multi, and all multis are bad for various reasons. And the companies that make them are just vultures preying on the worried well and the desperate without and chance that their concoctions will do anything to help. You're just wasting your money, I'm afraid.
So, you have what we call Central Hypo. That is where the pituitary or the hypothalamus is at fault and not the thyroid itself. Trouble is, this condition is considered to be rare, so the majority of doctors have never heard of it, wouldn't recognise it if it got up and bit them, and is never looked for.
What you need is a pituitary-friendly endo - they do exist - who can test your other pituitary hormones to rule in or out a pituitary problem. I would suggest you do your homework first and then ask on here for recommendations for a knowledgeable endo, and then ask your doctor for a referal. But, you do need to know what you're talking about, because your GP won't know! I hesitate to send you my links because the last person I sent them too said I'd scared her and I don't think she took it any further. I don't want to scare anyone!
As a next step, you could ask your GP to test your early morning cortisol. If that is very low, it might lead to further exploration, because cortisol production is also controled by the pituitary. But the pituitary is definitely the route you need to follow.
I have tried with several GPs at my surgery to get some further testing and help but its no go.
I would be very grateful for any links, I have wondered before it this was my issue.
Perhaps slight exaggeration to say my TSH never rises but it has never been any higher than 4 even when my T4 and T3 levels are very low (close to bottom of range).
It did drop when I had thyroiditis a few years ago and was briefly in reverse in terms of test results (low TSH and high free Ts). But it doesnt seem to move from 1-2 regardless of thyroid numbers.
But I'm sure there's a lot more info out there if you search for it.
GPs just don't understand enough about thyroid to recognise the need for help. The only look at the TSH and if that's in-range they think that everything has to be ok. But, of course that's not true, because that is assuming that everyone has a perfectly functioning pituitary, and they don't. The pituitary can go haywire just as the thyroid can.
Have you had any sort of blow on the head or head accident? Or lost a lot of blood in childbirth? If so, tell them about it. That might stir some vague memory of pituitary problems in the depths of their subconcious.
Have had a good read through and will have a ponder about next steps. I am pretty sure I wont get anywhere with my surgery.
Have never had a head accident or major blood loss no. I do have some positive auto immune antibodies (bot thyroid) but not sure this would have an effect?
WOuld you recommend trying out eg Metavive? And see if that helps?
I dont feel too bad at the moment, bit tired and bothered by weight gain but not enough to tackle the issue with my GP. So trying to boost my levels is probably me best bet for now.
TPO and Tg antibodies? They won't affect your pituitary but they are an indication that you have Autoimmune Thyroiditis - aka Hashi's - and that your thyroid is under attack. But your main problem is the low TSH. If the thyroid doesn't get the correct level of stimulation then it can't make hormone. And your FT3 is low enough to cause a lot of symptoms (antibodies don't cause symptoms), including high cholesterol, fatigue and weight-gain.
I cannot comment on Metavive, I've never tried it and know nothing about it. I believe it helps some people but not others. But, the problem there is that if you raise your thyroid hormone levels, and your TSH drops even further, it will delay getting any sort of diagnosis.
I dont have positive TPO or Tg antibodies, I have positive anti smooth muscle antibodies which relate to possible liver issues in the future.
I have had low thyroid levels for years, post a bout of thyroiditis (after I had anorexia) so am not very hopeful about TSH rising and getting treatment, so am feeling a bit stuck.
Perhaps I ought to go private. Do you think its worth pursuing with my levels and issues? Thanks for all your input...
Anorexia is a known cause of hypothyroidism. Does your doctor know about that?
If you have a problem with your pituitary then you TSH is never going to rise, but that should not be a problem with the right doctor. Yes, absolutely, you must persue this due to your low Frees. You cannot live like that. Plus if the problem is with your pituitary other pituitary hormones are going to be low as well. It is essential to get it investigated. Maybe you should go private, but make sure you chose your endo wisely. Ask for recommendations on here.
Would you suggest asking for recommendations for pituitary specialists or just any endos?
It will have to be private as I cant face the GP again and the same old conversation about TSH and yes she does know about the anorexia and its all over my notes.
I'm not sure there is such a thing as a pituitary specialist, but you need one that has already had dealings with Central Hypo. There are quite a few members on here who have been diagnosed with CH, so maybe they can recommend someone near to you.
Difinitely not just any endo! Most of them are diabetes specialist who don't have a clue about thyroid! They would be worse than your GP!
You need a pituitary and adrenal thyroid specialist
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS
Might sound a bit lame but am not sure how to work out if an endo is a thyroid/adrenal specialist and whether its best to try to see someone local or go with a zoom appt?
I have the lists from Thyroid UK but get bogged down looking at these and working out next steps.
I am in Norfolk and there is very limited help here.
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