please can I have thoughts please as I am so confused.
All my thyroid issues developed after covid 2021 and my T4 & T3 had decreased bit by bit. My TSH was above 3 but within range. Since all this kicked off my moods are so up and down so very hard to cope with among racing heart, palps mornings and find my body ill at ease.
my functional doctor is currently treating me for low T4 I am now at 62.5mcg. My last apt was last week and I was very low & in tears, he said my problem is coming from elsewhere in the body affecting my thyroid and not the thyroid itself. How do I find what’s causing this? OR put it right?
I am post meno and on 75mcg Estrogen patch only as iv had a hysterectomy. He started me on utrogestan 100 in hope it would help conversion BUT 2 days in and my mood is ten times worse.
I’m at breaking point. Could I possibly be on too much estrogen? Could this be why my thyroid isn’t converting right?
my 4 point cortisol was ok. My bloods were good last Jan and I’m due to re do them.
Please can I have some good help/advice? Tk u!
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Hi Tigger, no I’m about 70 kg. After my last post you kindly suggested perhaps going slower with dose of 12.5 instead of 25mcg and this is more comfortable. I had covid last week.
It’s just what functional doc said about treating the cause as he thought I’d be feeling lot better by now, but at 50mcg T4 I was still only 16 and my T3 was 3.7. I have improved from I began T4 but I get these horrid blips is it my body adjusting? Do you think I’m on right track treating thyroid still? Tk u so much. Today was horrendous I am not taking the progesterone again, it puts me in such a dark place☹️
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Curious who produced the pathlabs.ribuht.nhs.uk document for 2006…all the hypothyroid treatment seems to keep TSH in range, else if below we get thyrotoxic?
Around ten years ago, I tried very hard to get this documented corrected because it has some egregious errors in it. I even had contact with Graham Beastall who, whilst amazed no-one else had noticed, accepted that there was an issue. By then, he had retired, and even he could not get it corrected.
The document includes this:
Mechanism for updating
The guidelines were completed in June 2006. Comments on their accuracy and
relevance are invited during the first year after publication and should be directed to
gXXXXXl@gri-biochem.org.uk. It is intended that a full review will take place after
three years
In my view, the document should no longer be in use. There is no ongoing maintenance and it should be dropped entirely.
No-one should ever use out-of-date guidance documents. Even if all that happens is that that someone takes responsibility, puts a new date for review, and it gets re-published. As it stands, it is an orphan document.
The ribuht document should never be used because it has no author/person responsibility, no dates at all (the PDF was actually created 20/03/2011). Effectively zero provenance.
No formal body should EVER publish like this. And old documents should be put into an archive - ideally with every page over-printed "WITHDRAWN" or something like that. That is, access should be possible but anyone reading could not mistakenly think it is current.
Yes wholeheartedly agree that is in part why I asked where it was from, not wanting to point fingers but Slowdragon had given the link above. I wishfully hoped it was another world/ time but the very fact it still lurks on the web means it can be seen and apparently nhs endorsed! It smacks of ‘the old/ 70year old women should have their levo etc removed’ camp favoured by a NE endos. ( my nearest centre).
I am post meno and on 75mcg Estrogen patch only as iv had a hysterectomy. He started me on utrogestan 100 in hope it would help conversion BUT 2 days in and my mood is ten times worse.
You could find your mood dipping too much with 100 Utrogestan a day because your oestrogen is so low. 200 is nothing, you need 180 at least for bone protection. I'd look at increasing to 100 patch and perhaps trying the Utrogestan again when that's settled.
Less than a woman in her 40's probably. But not so little as to be barely effective. I'm 61 and my last reading for oestrogen was over 700. If I reduce it I feel really depressed and flat and grey. It's horrible. It's like thyroid meds, we all need what we need. We don't need what a chart says or someone else has.
With so little oestrogen the progesterone is overwhelming you. But it's good stuff once you have enough oestrogen.
Fancy did you have your thyroid sorted whilst being able to go up to 700? 3 years ago I was on 2mg oral estrogen felt great then had jab and it uprooted my whole balance, I did not have a thyroid issue before that. I am now on 75 patch and tried last Nov to increase it and I felt dreadful!
Could it be that because my thyroid isn’t optimal that I can’t raise my estrogen? Tk you!
Perhaps that's not helping. But I have been suffering thyroid issues for 8 years and never been optimally medicated. I just can't cope with higher levels. My TSH is stuck around 3-4 and my Frees are below optimal.
What progesterone were you using when you felt great? Can you go back to that one?
You can cut patches into half and quarters with a craft knife and roller. So creep up slowly. Just remember to cut lengthways not across the middle where the backing papers split. If you cut widthways you can't get the backing off! Trust me. Done that.
Thanks Fancy, sorry you can’t get optimal, are you at least functioning ok?
No it was estrogen 2mg my level was 570 then 3yrs ago but as I say my body was put into havoc mode in covid. I changed to patches to lower SHBG as it binds sex hormones. At present my patches are 100 but I cut to 75, perhaps now that I’m on T4 I could try increasing a little. why the roller?
No probs! I have had a hysterectomy so wasn’t on progesterone. I knew I was intolerant to mirena and cyclogest but omg the dark mood on utrogestan I could not stay on it. I think he was thinking it would balance estrogen. For me estrogen was the feel good hormone.
he said my problem is coming from elsewhere in the body affecting my thyroid and not the thyroid itself
That was a very strange thing to say without further clarification. And, there were so many questions that should have been asked at that point, like: why do you think that? Did you ask any questions? Without knowing his reasoning, it's difficult to take that point any further.
There aren't many places in your body that could affect your thyroid, your adrenals being one. But, if as you say, your 24 hour saliva cortisol test was 'ok', then it's probably not your adrenals - although 'ok' is not the same as 'optimal'.
He could have meant the pituitary/hypothalamus - what we call Secondary Hypo. If it was that, it would have shown up in your blood test results before thyroid hormone replacement - but not now. Do you have your blood test results and ranges from diagnosis?
With Central Hypo, the Frees are very low, but so is the TSH. Whereas with Primary Hypo (thyroid problem) the Frees are low and the TSH is high.
Were your antibodies tested to know if you have Hashi's - aka Autoimmune Thyroiditis?
But the only way you can find out what he what he was talking/thinking about is to ask him.
However, Central Hypo will not be a reason for poor conversion, I don't think. There are many, many possible reasons for poor conversion, and it's unlikely that you will ever find out why. Optimising all your nutrients might help. But then again, it might not. At the end of the day, most of us just have to give up and start taking T3 along with our levo, because good levels of FT3 are essential for good health.
Could this be why my thyroid isn’t converting right?
Conversion problems do not stem from the thyroid itself. I don't suppose your thyroid is doing anything much at all since you started on thyroid hormone replacement (levo). Conversion is done in the liver, the brain, and the peripheral cells. Too little estrogen can affect conversion, but I don't thing too much does the same.
Thanks GG these are my most recent cortisol. Posting other results shortly. He said I should be feeling better on thyroid med if it was thyroid itself and that it appears something else is affecting it……. He then said to try me on progesterone to balance the estrogen I’m on as low progesterone can inhibit conversion. Then if that no good he would do other testing for metals, stomach disbiosis. I was in tears that day, I had covid and only had begun adding 12.5 T4.
I feel so unlike me at times, v vulnerable and low then other times I’m good, it’s a rollercoaster.
Iv no diagnosis yet!
Not sure how to save this while I copy & paste other results so I’ll be back😋 much appreciated!!
He said I should be feeling better on thyroid med if it was thyroid itself and that it appears something else is affecting it…….
No, sorry, that's rubbish. You will feel better on thyroid hormone replacement when you're taking enough of it. At the moment you aren't. Whatever the cause of hypo there's only one treatment: thyroid hormone replacement. There is nothing else you can do. And it's the lack of thyroid hormone that is making you ill, not the cause of your hypo. So, take that as a red flag: he doesn't really know much about thyroid!
He then said to try me on progesterone to balance the estrogen I’m on as low progesterone can inhibit conversion.
No sure how true that is but it's always a good thing to do.
Then if that no good he would do other testing for metals, stomach disbiosis.
No, he doesn't know much about it. As said below, what he should be testing for is other pituitary hormones. It's either the hypothalamus or the pituitary that is at fault here. They don't test for hypothalamus these days, can't remember why, but you can and should test the pituitary.
So, in a way he's right - the source of the problem is elsewhere in the body - but for the wrong reason. He needs guidance on what to do next.
Very low FT3, FT4 below range, but TSH only 3.22. It should have been a lot higher.
So, I imagine that's the problem, and the body part, he's talking about - he should have been a lot more specific!
For some reason, your pituitary does not appear to be making enough TSH - Thyroid Stimulating Hormone - to stimulate your thyroid to make sufficient thyroid hormones to keep you well.
To prove it, he should be testing other pituitary hormones, because they might be low and causing problems, too. But, apart from that, and taking thyroid hormone replacement (levo, T3) there's not a lot you can do about it.
The low TSH could be affecting your conversion but if so, there's nothing you can do about that, either. You just need to take T3.
So, question is: as he suspects the root of the problem, what is he doing about it? Is he testing other pituitary hormones, like HGH, ATCH, etc? Is he planning to put you on T3? It all sounds a bit vague.
Thank you GG for kindly replying. I am so desperate but I tried the T3 and my headaches and high anxiety were off the scale. I’m so worried as to what I will be able to do to get well again. Do I keep on the T4 for now? Has it to be higher before introducing T3 again? Please let me know your thoughts.
Well, your FT4 is only 40% through the range, so probably needs to be a lot higher. But I don't know if that will make it easier for you to adapt to T3.
Did you take on board all the other things I said about the cause of your hypo and the way forward? Did you see both my responses?
GG im unsure what to do next do I stay on 62.5 til the 6-8 week period then increase by another 12.5? Also I’m unsure how I’m going to take T3 if I have such awful side effects? Is there another T3 I could try and when?
Given how low your FT4 is, I would increase by 25 mcg - but not until you've had your next set of tests. So, yes, you should stay on your present dose of levo til at least the 6 weeks is up.
No point in worrying about T3 at this point, get your FT4 up first; But, yes, there are a lot of different T3 brands to try.
But most important of all, you should be having a conversation with your doctor about Central Hypo - as described above - and he should be testing the other pituitary hormones. Because if they a low, that could be a big part of you problems. I could be wrong about the Central Hypo, of course, but it needs checking out. Far more important that checking metals and stomach problems, it should be his priority.
Dear GG I really want to sincerely thank you! You are a Godsend. You are right, I rem someone else mentioning central hypo. I shall be having a conversation around that for sure. No, there is abs no point in testing hair etc I agree. I will go ahead as you have suggested. Can’t Tk you enough💐
Dear Foxy, a thought just came into my head. Why not take the T3 with food. If anyone tells you that it has to be taken on an empty stomach then they are sadly mistaken..There is tons of evidence that you can in fact take it on a full stomach. Please consider. Easy
I would suggest getting your nutrient levels tested. Covid and inflammation could have changed the levels of your vitamin B12, folate, vitamin D, ferritin, and possibly serum iron as well. If you could get your doctor to do a Full Blood Count as well that would help to identify if you have become anaemic.
I feel your pain. I thought I was overdosing and woke one morning and decided (god knows why) I would stop all medication and see if all this was just my imagination anyway and I might have something more like metabolic syndrome. Anyway I lasted 4 days before I swelled up and my erratic heart kicked off. It’s taken me months to get back any sense of balance (still not there and lost an awful lot of hair in the meantime). As grey goose put it beautifully it sounds like he or she is stabbing around in the dark and being vague. You won’t feel good until you are optimum so the focus needs to be on that and if after that you still don’t feel good then start to poke around. I’ve just had covid and that’s been at the same time as being under medicated. My vitamins were all still optimal though so not sure how much covid has an affect but everyone is different. It’s awful feeling out of sorts you have my utmost sympathy. I’d be starting with an increase and an introduction of T3 if it were me as grey goose suggested
I’ve been on NDT for years with mixed success. This particular brand I’ve been on with mainly success for about 4 years I think. I have t been regularly having blood tests though and I’ve probably been under dosed for a while
I would push for an increased oestrogen dosage. For some (myself included) gel is more effective than patches. It took me several dosage/ brand changes to find my ‘optimal combination’.
For me, adverse symptoms to HRT not being optimal mirrored thyroid medication not being optimal, so it can be difficult to unpick which is at play. I would either adjust thyroid medication or HRT within a 6-8 week period, so you can work out which change/ dosage is effective.
Hi Buddy, did you get your estrogen dose up before thyroid was optimal? I’m beginning to think I need my hormones sorting as that could be why I’m reacting Meg to T3 etc.
I wake up with a racing heart, have some night sweats and my moods are so changeable. Tk you
I managed to optimise my thyroid results prior to HRT. Once on HRT I needed to adjust thyroid meds slightly downwards, as I did feel ‘hyper like’ symptoms (& results showed my FT4 had increased from my ‘sweet spot’ where I feel most well). On HRT I settled on oestrogel pump (3 pumps each morning) and utrogestan (I tablet nightly). I was original told to take the progesterone 2x tablets for 2 weeks on, 2 off, but this made my anxiety spike.
Thanks for sharing. Sounds like you’re sorted. I know iv had negative response to cyclogest in the past and mirena coil.
I have had a hyster years ago so don’t need for womb protection but he thought utrogestan could help thyroid conversion. I felt dreadfully low and I don’t know for sure if it’s post covid or progesterone - just wish I was well again!
I read quite a bit of the replies. I would like to reiterate the most important thing I believe has been said by Grey Goose...which is, is he planning on putting you on T3? As I remember from a not so long ago post of yours, you were having problems taking T3. Have you sorted that out? Honestly, through this whole thing from last November, low T3 has always been your problem. There has to be a way to sort this out! Please listen to GreyGoose otherwise you are just chasing you tail! Love, Easy If the T3 you were taking didn't agree, please try a different brand.
Hi Easy, not in a good way at present. I’m so anxious and covid has made things worse. I know I need T3 but I don’t know how I’m going to take it☹️Tk you
Foxy, I need you to know I care, that I am sincerely sori you are suffering. I do not mean to sound flippant. This is a long gnarly process since the doctors are clueless n we aren't scientists. I wrote that in the middle of the night while not being able to sleep. I woke thinking about a comment on one of your post suggesting you maybe trying NDT, natural desiccated thyroid hormone because for that person the intensity of the T3 is mild and she could tolerate it. I am so sorry from the bottom of my heart that you are going through this. Your friend, Easy
Aw thank you Easy that’s so caring. Yes I could mention that, so you think the T3 in that NDT might be milder?🙏🏻 My body for some reason is sooo blooming sensitive!!💐
Definitely milder. I am on NDT and fare fairly well. I know you have other issues but i believe that if you try NDT for a minimum of 8 weeks you will feel a humongous difference. There is a post on this forum where the person felt instantly better n was working up to 3 grains. Everyone is different. However, NDT is the "oldest" form of thyroid therapy. It can be tricky because not every NDT is equal. For example, I was on Armour Thyroid 4 grains...I became hypo but switched to Thyroid-S 4 grains and am do8ng good but I feel it's a roller coaster no matter what you do because of our age. I have been on 4 grains for most of my life. You deserve to feel better.
Hi Easy, that’s such good news that you are feeling better on T S!! It is difficult and a rollercoaster for sure. I will have to change something v soon. In what way does the TS help you more than the Armour? Ta
Bonjour, chez certaines personnes, la T4 ne se convertit pas en T3. Ces personnes doivent prendre de petites doses de T3 plusieurs fois par jour et un mélange de T3 et T4 au coucher. Et prendre des oestrogènes est très grave, les gens en ont tellement dans les tissus. C'est de la progestérone qu'il faut prendre
Translation of kris268 :Hello, for some people, T4 does not convert to T3. These people should take small doses of T3 several times a day and a mixture of T3 and T4 at bedtime. And taking estrogen is very serious, people have so much of it in their tissues. It's progesterone that you have to take
Personally, I don't believe in taking synthetic T4. Although, NDT is from a pig it is natural. Our bodies are similar. There was a post I read here where the woman didn't do well on synthetic T4 and T3 but was ok on porcine thyroid. It is worth a shot. Do not multi dose it but take in the morning when you wake up then wait an hour before eating or coffee or brushing teeth and see how you feel 6 to 8 weeks from now. I know you believe a doctor knows what they are doing but as GreyGoose pointed out, no not thus one. Personally, I have been self medicating for many many years because if I listen to the medical society I become so fatigued that I can't walk up a hill n cant sleep properly. I refuse to do it their way because it doesn't work. Plus, once you're on thyroid medicine NEVER EVER STOP EVER. IT WILL TAKE AT LEAST A YEAR TO GET BALANCED OUT again seriously!
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