Hypothyrodism: Hi, This site is fantastic. I’m so... - Thyroid UK

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Hypothyrodism

Georginaschoey
Georginaschoey

Hi, This site is fantastic. I’m so glad I’ve found it,

was diagnosed with hypothyroidism in February of this year, at that time my THS level was 146 and my T4 was 5.4. Which I know is seriously under active

I started of on gradual dose 50 then 75mg of Levothyroxine and am currently on 125mg. I’ve had a further visits to my doctor on the 11th of June as my symptoms were coming back. I had all the usual, lethargy, breaking nails, freezing hands and feet brittle hair tearful foggy brain, I had a blood test and my Dr said I was slightly overactive my results were THS 0.4 and my T4 was 125 but he would keep on 125mg

I’i made another appointment on Monday gone as my Hypo symptoms have gone worse, my nails, which have all split feel like they are coming away from the nail bed, I’ve started wearing socks to bed I’ve got brain fog and my heartbeat has been going down on a daily basis (I wear a Fitbit) going for a steady 74 to 58/60.

The receptionist called me yesterday to say the Doctor wanted to call be to discuss my results. She will call me this Friday. The receptionist told me my TSH was 0.8 and my T4 was 21.3. I’ve had all the other test for Iron, VitaminB12 etc etc and they’ve all come back clear.

My more raging recent hypo symptom started at the same time that I had a postmenopausal bleed after 4 years period free a month ago. I’m 53, I’ve had a biopsy and am waiting for the results. ( I’m wondering if the Bleed could have been linked to hypothyroidism)

I have a feeling based on these latest results that they are going to drop my dose and I cannot bear the thought . My body is screaming under active and my results are saying opposite. I’m at my wits end with the symptoms Im having.

My question is can I insist that I stay on 125 and can has anyone been successfully referred to a thyroid specialist on the NHS.

Doctors do not test T3

9 Replies
oldestnewest

Your FT4 was 125? Are you sure that's not a typo? That is unbelievably high and I would be suspecting a lab error, because the TSH doesn't correspond.

Yes greygoose..the results were TSH 0.4 and T4 125 and the last one I’m speaking to the Dr about tomorrow are THS 0.8 T4 was 21.3 which I think they will say is overactive but definitely not showing any signs of that. I feel dreadful

No, let's be clear about one thing: you are hypo. You cannot 'go hyper', that is a physical impossibility. You could be over-medicated, but I can't tell if you are because you haven't give the range.

Did you get a print-out of your results, or did someone just tell you 125 over the telephone. Because that has got to be some sort of mistake. The TSH would be undetectable if you really had an FT4 that high. And your doctor would have panicked and stopped your levo completely - that I can guarantee you! So, someone made a mistake somewhere.

21.3 looks high, but not knowing the range, I can't tell how high - probably not over-range. And, if it's not over-range, he has no justification for reducing your dose. Your TSH isn't even under-range at 0.8. So, if he suggests reducing your dose, just refuse.

But, if I were you, I would get private testing to get a more complete picture. You need :

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

Without all those results, everyone is just groping in the dark. The main problem is, your doctor doesn't realise he's groping in the dark!

Thank you. will be asking for a full printout tomorrow of all my results

You're welcome. :)

SlowDragon
SlowDragonAdministrator

Can you add the actual results and ranges of vitamin D, folate, ferritin and B12

Vitamins need to be optimal, not just somewhere within range

Vitamin D around 100nmol

B12 and folate towards top of range

Ferritin around half way in range

Do you know if you have Hashimoto's also called autoimmune thyroid disease diagnosed by high TPO or high TG thyroid antibodies?

Essential to test FT3 as well as FT4

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's.

Hashimoto's can cause temporary high blood test results as thyroid breaks down releasing a lot of hormone, known as a Hashimoto's flare.

Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Thank you. I am due to speak to my Doctor tomorrow and I will ask for a print out of all my result. The receptionist said everything else was fine it was just the TSH that was flagged. I’m praying he doesn’t try and reduce my Levothyroxine, the reason I went is because Im feeling so bad, like I did when I was first diangnosed

So, I want to suggest something to you that I imagine will be controversial.

My true desire is to help ease the very real suffering you've described.

I have recently discovered (via an ebook by a US naturopath doctor called Alan Christianson) the concept of 'dumping'.

Dr. Christianson is somewhat radical amongst naturopaths in that he actually values the TSH test results.

He suggests that our bodies are very efficient at ridding our systems of and preventing the effects of dangerously high doses of hormone supplement (for a while), through excretion in urine and the production of Reverse t3.

The cumulative effect of exogenous t4 supplementation takes a bit of time to manifest.

Dr. Christianson explains that, though counterintuitive, he has successfully helped patients, who come to him on very high doses of thyroid hormone, lower their dosages and achieve balance.

I'm no expert but the gist of it is that these hormones are very potent and our individual needs are actually quite precise. Even if we are slightly over-replaced, the level rises, consistently, and our bodies' response (dumping) results in a return to hypothyroid symptoms despite a seemingly reasonable dosage.

He has helped patients with the process of gentle reduction and he writes about specific examples in which people found balance at dosages far below their previous dose.

Finally, he describes the situation in which patients experience hypo symptoms and a dose increase seems to improve the symptoms, only to be followed by a return of symptoms some days later. The assumption is always that a further increase is the answer. In his experience that only exacerbates the problem.

Also, when you have been living in a hypothyroid state, you are not metabolizing properly. This includes the ingested hormone. As you move out of the hypothyroid condition, the effects of the supplemental hormone grow.

Last of all, Dr. Christianson says that if someone comes to him with a very high TSH and their dosage results in a significant decrease in the TSH over a few weeks, he knows they are over-replaced because there will continue to be, what he calls, 'drift' for up to three months.

I realize I've written a lot. But I'm fairly certain that if I had simply recommended his ebook "Healing Hashimoto's: The Savvy Patient's Guide", you might not have gotten to it...

I sincerely hope it helps you.

After reading books, blogs, medical journal articles, and anything I can get my hands on, his is the first and only idea of its kind I have ever seen.

I appreciate it especially because the perspective is "the lowest possible dose" to achieve balance and wellbeing vs. what sometimes strikes me as "just how high can I get my dose?l

There is something elegant about the idea that the answer to this elusive problem of correct dosing might be the counterintuitive "less is more", if you know what I mean...

All my best to you.

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