First Post - Need advice urgently, feeling so unwell, nothing seems to be working.

A brief history - Diagnosed with ME 23 years ago. Plodded on over the years until a friend suggested that my problem might be my thyroid. Blood results at the time were: TSH 5.88, FT4 12.7, FT3 4.3.

Saw Dr Skinner who put me on thyroxine. Started on 25, then 50, 75, 100,125. Felt ok at first then started feeling worse than before. Hyper and then Hypo daily.

Sadly Dr Skinner died before I could discuss this problem. Own GP then lowered thyroxine down to 75 as my results were: TSH 0.02, FT4 18.1 FT3 6.3. I should be feeling my better with those results and felt ok for a while then it all went pear shaped again.

Decided to see Dr P who said that the reason for not feeling well (under statement)was because I had a problem with T4 T3 conversion due to problem adrenals. Does he say this to everyone? Everyone I read about who has seen Dr P seems to say the same thing!

Anyway stopped thyroxine that day (on his say so). Started on various Nutri adrenal supplements, PLus other vitamins etc.

Struggled on feeling no better, then after two weeks started Nutri Adrenal supplements which didn't agree with me so started on NDT. I reached 3/4 grain over the next four weeks with no improvement. If anything it's worse!

Saw Dr P again last week who decided to put me on HC.

My issue is: After only one day on 20mg of HC Cream (taken yesterday) today I feel the worse I have ever felt. Shaking inside, very weak legs and can't stop crying. I generally feel dreadful, too many symptoms to list!

After reading the STTM book, it sounds like I might have pooled T3 from the NDT. The feeling I have is horrendous and wondered if anyone else has had the same problem.

Should I carry on with the HC? Will this hideous feeling pass? Do I stopped the NDT in order to clear the T3 whilst I build up my adrenals etc etc?

Sorry for all the questions but I am desperate and don't know which way to go. Can anyone help and shed some light on why nothing seems to be working!!

18 Replies

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  • ...so sorry you are having problems with balancing things out. I would suggest ringing Dr P's clinic on Monday - and explain to the person answering what the situation is. I found them so helpful when I had a problem a couple of years ago. They went off and consulted with Dr P and then phoned me back.....so difficult to advise with so much going on. He may of course be able to speak to you personally.....

    Yes you are probably right that Dr P does often say that patients have weakened adrenals - although I was not one. :-) I think it is because by the time people get to see him the adrenals are stressed due to the undiagnosed/undertreated thyroid situation.

    Sorry I cannot be more helpful and do hope you will soon be better...someone else with a similar experience will be along soon to help....take good care

  • Hi Marz, Many thanks for your reply. I will phone Dr P on Monday and see what he suggests. This is such a helpful site, it makes you feels that you not struggling along on your own. Kind regards.

  • Have you ever had your minerals and vitamins tested? The things that are often low in people with thyroid issues are ferritin, iron, vitamin B12, vitamin D and folate. If any one of these is not in the optimal part of the range (note - this is not the same as being "normal" or "in range" even though doctors would deny it) then you won't do well on thyroid and/or adrenal medication.

    If you have these tested and they are low, then you may have to accept that you need to keep to lower than optimum thyroid and/or adrenal medication for a while until you have rectified any deficiencies. If you don't then medications pool in the blood stream, make you feel poisoned, and generally make things worse.

  • Are you sure the T3 from NDT has pooled? It is more likely to be the T4 that pooled, because T3 is the active hormone and would be used up by your body very easily. You may eventually be someone who would do well on T3 only medication but only if your adrenals are sorted out first. Perhaps ask Dr P about it? It is useful for people who are not converting well from T4 to T3.

  • So sorry to hear about the problems you are experiencing. I was diagnosed with ME /CFS 12years ago. Two years later I was diagnosed with an under active thyroid gland. I saw Dr Skinner over a period of 8years and I found that levothyroxine did not work for me. I moved across to a NDT but I did need t o support my adrenals -initially as you described but then went on to the the circadian rhythm method -the adrenals would normally get a surge of thyroid in the early hours to help them do there work -this method mimic this. I found this really helpful but I would suggest that you don't try this until you have sorted out what is going on more with your thyroid meds.

    Check your vitamins and minerals -in CFS/ME there is often low B12 -this was the case for me and I have benefited from upping my levels.

    Am so sorry that you did not get a chance to follow this up with Dr Skinner -who would have no doubt sorted you out -bless him. greatly missed.

    Ask your doc to check your bB12, folate, iron, vitamin D and magnesium. Getting these so they are in the upper part of the range can help with the uptake of the thyroid hormones.

  • Hi, I'm not sure how to add to my story, please someone let my know if I'm doing it wrong. Many thanks for all the replies so far, they are all very helpful.

    Along with everything else, I have been diagnosed with Hashimto's with anti bodies >1000.

    Recent ACTH test was "normal" starting cortosal 431nmol/l then 30mins 652nmol/l and 60mins 794nmol/l. Not really sure what all this means.

    Recent bloods:

    B13 680 (range- 220-914) Should raise it?

    Ferritin 74 (range- 34-528) Should I raise it?

    Follate 14.9 (range- 2.6-20.1) Should I raise?

    Vit D 93 (Test says adequate) Should I raise it?

    I also take:

    Vit C - 1 Gram

    Co Q10 - 100mg

    Vit B 5000 iu

    Nutiri Extra Adrenal x 1 tablet (feel ill on more)

    Nutri Thyroid x 1 tablet

    NDT 3/4 grain

    HC cream 20mg (split into 4 daily doses of 7.5mg - 5mg - 5mg - 2.5mg)

    Oh, fogot to add that my recent thyroid level of TSH is 8.47.

    The doctor couldn't re-do the FT4 or FT3 as I only had them don three months ago.

    I have everything tested by my homotoxicologist using a vega machine. This is how i have come to calculate the amounts of supplements that I take.

    Does anyone else do this?

    Feeling very unwell taking NDT and HC together, could I have a problem with RT3?

    I'm trying everything I can but still nothing is working.

    if anyone has any ideas as to what else I can do, please let me know.

  • Schilling, click on on the yellow Reply button under the post you are replying to and the member will be sent an email alert.

    Your high TSH 8.47 means your FT4 and FT3 are low and causing your hypothyroid symptoms not rT3. I've read that HC can take a while to adjust to when trying to sort out adrenal fatigue. B12 5,000mcg is plenty. Folate, ferritin and vitD look good and don't need supplementing IMO.

  • Hi Clutter, thank you for your response. In my Post I stated that I took Vit B 5000iu, I actually take Vit D 5000iu! I am not taking any Vit B at the moment. With my Vit B levels at 680 (range-220-914) should I raise?

  • Schilling, I think your B12 is fine at 680.

  • Shilling - no wonder you feel ill - your TSH is far too high, you're Hypo again!

  • If I were you I would get a cortisol saliva test done by Genova Diagnostics and if that is fine, start T3 only. Dr Skinner advised me to start at 25 mcg for two weeks and then 30 mcg for two weeks and then 40 for two weeks, After that increase by symptoms, until you feel stable. You could do this for twelve weeks to clear T4 that is pooling and then if you wish, gradually go back to NDT but many people just stay on it all the time. You will probably notice a big difference after doing it, in the way your body processes medication. Hope you feel better soon.

  • Hi Hennerton, I have had my cortisol level test by Genova and found that I have low cortisol and border line DHEA This is why Dr put me on HC as the Nutri adrenal isn't helping. Do you know if I can take NDT along with HC or should I stop everything until my cortisol levels are better? How would I know this as I have read somewhere that once you are on HC, the Genova test is pointless re-doing as HC messes up the results. I am so confused!

  • I think it is the T3 element of NDT which proves difficult to take if cortisol is low but clearly you need to get some thyroid medication into your cells somehow, in view of your high TSH. I am sure it is fine to keep taking thyroid meds with HC. You obviously need both at the moment but can slowly taper off the HC as you improve. Did you know Dr Skinner wrote a very good book and there are several reference to taking HC. Might be worth getting. It is also very funny, as you would expect. "Diagnosis and management of hypothyroidism".

  • I have Dr Skinners book but do not remember the section on HC as I didn't think it was relevant to me at the time so didn't fully take it in. I will re-read it. He was such a lovely funny man, such a shame he's no longer here to help us. The one thing I'm confused about is that Dr S & Dr P seem to differ in their approach. It's difficult choosing who's method to go with. Many thanks

  • I agree about the different approach and on the whole Dr S thought that correct thyroid meds would sort out mild adrenal problems. Depends what Genova said in their "summing up" I think. Just how low are yours?

  • Morning 8.3 (low) + 4 hours 3.7 (low) + 4 hours 2.1 (low). Overall score 15.7(low) Range 21-41. Genova's comment was Exhaustion Stage. Were yours results about the same?

  • No, mine were very different. Much too high in the morning, middle two just in range and a tiny bit too high in evening. I was the first stage I think but honestly could not face doing anything about it, as I rather like being able to get up early in the morning, with plenty of energy and I think as I have always been the same, it must be normal for me.

  • Hi, your present symptoms are much more likely to be from being overtly hypo with a TSH that high. T3 doesn't pool as Hennerton had said, more likely to be the T4 in your NDT that has maybe caused reverse -T3 issues???? Anyway, if your TSH is 8 on 3/4 grain NDT then your dose needs upping I would have thought.

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