Take More Meds...TSH low: Hi everyone, hope you... - Thyroid UK

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Take More Meds...TSH low

MAB5
MAB5

Hi everyone, hope you can help me with a question. My Doctor called today to tell me to take up my dose of Tapazole from 10 mg to 15mg following my latest test. I have been feeling pretty good at last, after months of hyper, then she over medicated me to extreme hypo, now I feel better except for extreme pain in my right side lower back/hip area. Anyone else have this or maybe I just strained a muscle? Been going on for nearly 3 weeks, not much better. Can you also check out my latest blood tests and give your opinion please? I am in US so not sure if the tests are the same. Seems my TSH is low. Graves Disease

T3 uptake 32

T4 total 11.8

T4 free 3.8

TSH .01

I really appreciate your help, thank you.

31 Replies
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shaws
shawsAdministrator

I am sorry you have Graves and those who have/had will respond when they read your post..

MAB5
MAB5 in reply to shaws

Thank you so much.

SkyBelle
SkyBelle in reply to shaws

Hi Administrator,

This site is brilliant. My update is that I am changing my Drs Surgery as I do not believe they are treating me at an optimal level. Through my seeking to change to NDT I came across one extremely informative person with a Pharmacology background. What an experience! Due to my post cancer body with Radiation & the Cysplatin Chemo, it is natural that my system is not as tough anymore hence my complete intolerance to any increased level of Levothyroxine from 75mcg to 100mcg. Dr did not listen and was disposed to shouting! I plodded on with the 75mcg daily and felt quite well. With my new Dr, next week visitation,I have been advised to request a FULL Thyroid investigation and may require T3. My recent blood reading is not within ranges BUT I feel ok. Free T4. - 14.9. (12.0 - 22.0)

TSH 11.80. (0.27-4.20)

Apparently, there are patients on T3 .

I am looking forward to a real Dr with a pleasant manner instead of experiencing a rugby match with some Drs who , I believe, are out of their depth with some Hypothyroid Patients.

Thks for reading in advance.

Valarian
Valarian in reply to SkyBelle

Hi SkyBelle - the original post in this thread is from someone who has Graves' Disease, which is a hypERthyroid condition. As you are hypOthyroid, you may get more helpful responses by posting again, in a new thread.

Good luck with your change of doctor !

Do you have ranges for those blood tests? Without them, it’s not possible to tell how high the FT3 and FT4 results are.

I don't understand?

Marz
Marz in reply to MAB5

Jazzw will not have seen your response as you forgot to press REPLY under her post. 😴

shaws
shawsAdministrator in reply to MAB5

I see you have added the ranges. The reason for asking is that labs differ in their machines and so do ranges. (just to make things more complicated) and it is easier to comment.

greygoose
greygoose in reply to shaws

I don't think she has added the ranges, shaws.

MAB5, have a look at SkyeBelle's response, above, and see how she's written her results. The numbers in brackets, after the result, are the ranges. And they are essential for interpreting your results, because they vary from lab to lab.

Also, you don't have an FT3 result. You have a T3 uptake result, which is never tested in the UK, so doubtful anyone will be able to interpret it. What you need is an Free T3 test, which will tell you how much T3 you have available in your blood for your body to use. :)

MAB5
MAB5 in reply to greygoose

I did not add ranges and my results are at work so I can't add until next week. Testing is different here so I have no Free T3 test result and not sure I can get one. I will ask Dr but she is not very likely to order that for me. I asked about vitamin levels but she has yet to consider that. The only reason I worry is that she took me to severe hypo after my first visit where I could barely function, I just can't do that again.

greygoose
greygoose in reply to MAB5

No, of course you can't! And that is very bad of her to let it get to that state! One wonders if she really knows what she's doing!

Where are you? In the US? Very strange that anybody is still doing the T3 uptake test, because it doesn't tell you much useful. It's a rather out-dated test. :(

MAB5
MAB5 in reply to greygoose

Yes, US, South Georgia, and she is the only specialist in my area and I only actually saw her one time, now her PA sees me but I guess she reviews my visits. She explains very little and last visit told me she thought I was not feeling as good as I told her because I have no insurance! I am 60 years old, if i feel bad, I will tell her.

greygoose
greygoose in reply to MAB5

What a strange thing to say! lol

MAB5
MAB5 in reply to greygoose

That is what I thought, I pay her cash every time, I am not poor, just refuse to buy into Obamacare.

MAB5
MAB5 in reply to greygoose

Bad part is she actually put this in my visit summary, so on my record.

greygoose
greygoose in reply to MAB5

I think she's a nutter! What on earth has that got to do with anything? Can't you insist she removes it? Not relevant!

MAB5
MAB5 in reply to greygoose

Yes, I did not know until I left but next visit she will remove it. It has nothing to do with anything.

shaws
shawsAdministrator in reply to MAB5

It is awful when we depend so much on an 'expert' to find that they don't improve our symptoms but make us feel worse. You just don't know where to turn.

MAB5
MAB5 in reply to shaws

It is scary! I was put in the hospital in the beginning and they thought heart attack, stroke ran all these tests, nothing, told me I was out of shape, which I am not, my daughter asked about my bloodwork. They had not checked it did so and finally found that my levels were scary high. Sent home with a 30 day script, took me 4 months to get an appointment with specialist. Nightmare, for sure.

shaws
shawsAdministrator in reply to MAB5

I, too, remained undiagnosed despite seeing 'specialists' etc and given other reasons - even an op and then was told when I came round I did not have what I was diagnosed with. What is it then? I asked and got no reply. I was also discharged from A&E with 'probably viral with high cholesterol'. For hypo 'high cholesterol is a red flag' obviously not red enough for the A&E as they never tested for thyroid hormones.This must have gone on for several years before a first aider suggested 'thyroid'.

So I, in fact, diagnosed myself and GP phoned two hours after test to ask who had given me a blood test form. I said "I did" and she said 'you've hypothyroidism' come and get a prescription. I wasn't in a fit state to go anywhere but husband got it and levo and I had no idea what any thyroid gland dysfunctions so began a journey I think most on this forum travelled to, finally, get well through TUK before this forum began. I was also fortunate to consult two doctors who knew what they were talking about. One died and the other advises but because he was pursued resigned his medical licence and has been very unwell recently.

MAB5
MAB5 in reply to shaws

The specialist I see is considered one of the best and she also has Graves Disease. She also is so busy that she relies on PA to give appointment summaries. Our area has horrible medical care of any kind. I just need to learn what is going on with myself so I can try to help myself.

shaws
shawsAdministrator in reply to MAB5

It is out of order for a P.A. to give advice and I think most of us on this forum - that includes myself - only recovered through the help of TUK long before this forum began. If you are seeing an 'expert' the very least you need is a face-to-face consultation.

MAB5
MAB5 in reply to shaws

They handed me a flyer on Hyperthyroidism on my first visit. They have yet to explain what or why this is happening. I have lost my muscle tone, and now I worry of bone loss because of my age. I have lost weight, my face has developed deep wrinkles, my eyesight has worsened. I needed answers not a flyer.

Valarian
Valarian in reply to MAB5

Interesting. We can expect a wait of several months to see a thyroid specialist in the UK (unless the tests suggest cancer), but that's on the NHS. If I were paying/using health insurance, I would expect to see the specialist within weeks.

Valarian
Valarian in reply to shaws

worse still Shaws - MAB5 appears to be dependent on the 'experts' PA !

Valarian
Valarian in reply to MAB5

Hi MAB5, I was diagnosed with Graves' almost a year ago, and like yourself, am still undergoing antithyroid treatment. The usual duration of antithyroid treatment in the UK is 12-18 months, after which you are taken off antithyroids to see whether your Graves' has gone into remission (ie your thyroid levels remain stable and in range without treatment). Common antithyroids include Tapazole (methimazole) in the US, carbimazole in the UK, and PTU.

In the UK, Graves' patients on antithyroids typically have FT3, FT4 and TSH tested every 4-8 weeks. The units used for FT3 and FT4 are different from those I've seen posted by people in the US, but if you post your ranges for these, we should be able to make some sense of them. If you've had different tests, we may not know much about them, but can probably suggest some questions for you to ask your specialist.

T3 Uptake test isn't one we usually see in the UK, and it does seem as though availability of cheap 'free' thyroid tests may have rendered it obsolete, although some of the online info available about this test is contradictory, and it appears that taking antithyroids can affect accuracy of the results. medlineplus.gov/ency/articl....

There are two types of antithyroid treatment, one which involves providing a consistently high dose of antithyroids, to completely block thyroid function, alongside thyroid replacement (eg levothyroxine) - this is known as 'Block and Replace'. At the end of the treatment period, the patient is taken off both drugs to see whether the thyroid will function normally. The alternative is known as 'titration', which starts with a high dose of antithyroid alone, but reduces it over time as the thyroid stabilises, until it is withdrawn completely. It sounds as if you are on the latter, as am I. The problem is, the thyroid is still functioning during this treatment, and can have periods of behaving itself relatively well, and periods of going hyper again. Becoming over-medicated on this regime (and maybe having results below range) isn't unusual, and is usually quickly resolved by reducing the antithyroid dosage. However, a few weeks of being 'hypo' can be a nasty shock ofter months of being hyper !

If FT3 and FT4 are both within range, and TSH is low a couple of tests later, it may just be that your TSH is taking a while to recover - this happens, although it MAY be indicative of the chances of relapse. thyroiduk.org.uk/tuk/resear.... If both thyroid levels are within range, increasing antithyroid dosage may result in your dipping below range again - but note, your specialist's view of the maximum range they want you to achieve may be lower than the standard reference range.

If either FT3 or FT4 is above range, you would expect TSH to remain suppressed - and in this case, increasing the antithyroid dosage would make sense.

MAB5
MAB5 in reply to Valarian

Yes, I think the initial dose was way too high at 3 pills and then lowered to 1/2 pill now we are back up to 1 and 1/2 pill. It is like a roller coaster! I just fear becoming too hypo, I could barely move when that happened. I am hoping that in time we can stop the meds, she also has me on beta blocker which she is going to try to decrease next time. My issues came about when I stopped smoking so hoping it will go into remission, it has been 10 months now and 6 months I have been under Dr care.

shaws
shawsAdministrator in reply to greygoose

Thanks Greygoose. You're right. I mistakenly quoted Skyebelle's results.

Did your doctor tell u it was graves and if so can u tell me allof your symptoms. I also have graves and live in the usa.

In the UK (and probably the US too), doctors can be quick to assume Graves', although positive antibody tests (TSI or TRAb) give more confidence, and if you haven't had one of these tested, I would push for it. In the UK, these tests are typically ordered by the specialist.

Common symptoms include rapid weightloss in spite of good/increased appetite (because increased thyroid levels increase your metabolism), palpitations, tremor (in the hands), mood swings and anxiety. People may tell you you're talking too fast, or you may feel that your brain is working too fast for your mouth to keep up ! You may also find that on a cold day, you are wearing short sleeves and opening windows, while everyone else is turning up the heating. You may also have loss of strength in muscles (eg struggle to rise from a sitting position), find you are always thirsty, and switch between bursts of huge energy, and feeling completely wiped-out from the effort. (You'll probably have exhausted everyone around you too !). Thyroid Eye Disease is an associated condition, so any changes to eyes/vision should be reported to your specialist as soon as possible.

MAB5
MAB5 in reply to Espisnowwoman

My doctor suspected it on first visit and antibodies confirmed it.

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