Symptoms beginning to return after feeling much... - Thyroid UK

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Symptoms beginning to return after feeling much better

Blokey151263
Blokey151263

Hi

I posted here about 6 weeks ago to say I was feeling much better......

However in the last 3 weeks I have started to notice the slow return of my earlier symptoms, i.e. feet are getting painful again, more tired etc etc.

I have seen my GP and he has agreed for me to see an endocrinologist next month which is good.

Looking back at the two medicheck tests I have had:-

31/08/18 FT4 18.4(12-22) FT3 5.03(3.1-6.8) TSH 2.84 (0.27-4.2)

29/10/18 FT4 21.3(12-22) FT3 4.54(3.1-6.8) TSH 2.18 (0.27-4.2)

I notice that the FT4 reading is going up whilst the FT3 is going down.

I have read about reverse T3 and am hoping the consultant will be able to explain the change in how I feel.

Has anyone had a similar experience ?

13 Replies
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Some people need a dose increase in winter ...

SeasideSusie
SeasideSusieAdministrator

Blokey151263

Your TSH is too high for a treated hypo patient. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.

See pathology.leedsth.nhs.uk/pa...

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level ........ This Indicates

0.2 - 2.0 miu/L ........ Sufficient Replacement

> 2.0 miu/L ........ Likely under Replacement

and Dr Toft's article in Pulse magazine (the magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

He has recently confirmed in a public talk that this also applies to Free T3 result as well as Total T3 result.

Dr Toft is past president of the British Thyroid Association and leading endocrinologist.

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor.

Your T4:T3 conversion isn't brilliant with your FT4 currently 93% through it's range and FT3 only 39% through it's range. However, how long did you leave between your last dose of Levo and the blood test? It should be 24 hours.

For good conversion you need optimal nutrient levels. What has happened about your low B12, folate and Vit D discussed in this thread

healthunlocked.com/thyroidu...

Supplementing with selenium l-selenomethionine can help conversion although some people prefer to test their level before supplementing.

Once all nutrient levels are optimal, if there is still a conversion problem then it's worth considering the addition of T3 to Levo.

Thank you for your reply Susie.

My latest TSH reading taken at the doctors on12/11/18 was 1.56 so it is getting there . I have been on 125 mcg Levo for 3 months now, and left 24 hours after the last dose for the Medichecks test mentioned earlier

Regarding the Vitamin D, I have put myself on 5000U /day and it is slowly coming up (last test was 79 (50-200) from 21.5 when I was diagnosed hypothyroid in April this year.

Have been taking Vit B12 and Vit B Complex supplements for a couple of months now and am due a retest soon.

Hopefully some T3 will do the trick..

Marz
Marz
in reply to Blokey151263

Once supplementing B12 - further testing is of little value as the results will be skewed. The test result shows the amount in the blood and not in the cells where it is needed. Members are often told they do not then need to supplement .

Blokey151263
Blokey151263
in reply to Marz

When you say further testing is of little value and results will be skewed, which test(s) are you referring to?

Marz
Marz
in reply to Blokey151263

As mentioned in my reply above - the B12 ... 😊

Blokey151263
Blokey151263
in reply to Marz

Ah OK. Sorry its a bit early 😊

Gosh, do you really think a consultant will know? I admire your optimism. I doubt he'll have a clue. But, will no doubt come up with some fairy story off the top of his head.

What is happening, as I see it, is that your conversion isn't brilliant, and now your FT4 has reached the point where the T4 is converting to more rT3 than T3 - this is a safety valve to stop your T3 going too high, but doesn't always work in our favour. So, as more rT3 is being produced, less T3 comes from more T4, if you see what I mean. And, the only solution is to reduce the levo, and add in a little T3 to make up the difference. :)

Thank you for your reply, I was thinking along the same lines i.e the Levo may need reducing but as my GP has not mentioned prescribing T3 I presumed (am hoping) a consultant will be able to do this.

Depends on the consultant, really. I think they all can, if they deem it necessary, but they don't all see results with the same eye.

Yes, I've had the precisely same experience, Blokey151263. And happy birthday, by the way. I did the 23andMe genetic health testing, then rummaged through my raw data and found I have the DIO genetic variation that impairs conversion (deiodination) of T4 to T3 . The only thing that has worked for me has been going off Levothyroxine completely and taking straight Liothyronine. I feel great now. No more cycles of feeling better on a higher dose and then feeling worse.

A consultant might be able to lead you through this discovery process, but nothing trains and focuses the mind like going through the experience itself, being unable to think clearly, struggling with fatigue and weakened immune response. I'd inquire about the consultant's experiences with deiodinase impairment. If they say "What do you mean?" scratch them off your list of possibilities.

Good luck.

Kitten44
Kitten44
in reply to RockyPath

Hi, is it the "health and ancestry" test you got done in 23 and me?

Thanks!

RockyPath
RockyPath
in reply to Kitten44

Yes, that's the one. They don't make it very easy to FIND your raw data, and don't give a tutorial on how to dig around, but I searched on "DIO1" and "DIO2" and then did web searches on the variants, or SNPs, which are identified by rs number. When I looked up each rs number for each variant, not by clicking within the 23andMe, but via web, I either found nothing, at all, or something enlightening.

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