hypothyroidism results

[Coco1230]

and finally these are my recent results and tomorrow i am starting 50mg. so my dose has now been reduced to 50mg daily.

[SeasideSusie Remembering]

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Coco1230

You can add further photos in replies in the same thread, just click on the rectangle at the end of the row of icons below the reply box, you can add one picture per reply.

I have closed the other posts so that all replies can be kept together here, otherwise it gets confusing having replies spread across multiple threads.

Why has your GP reduced your dose? There is absolutely no need. Your FT4 is well within range at 65% through it's range. In fact your results on 17th July were better when your FT4 was 19.7 (89.17% through range).

Your GP seems to be making the mistake that most doctors do, that is adjusting dose according to the TSH level. This is wrong. TSH is not a thyroid hormone, it's a pituitary hormone. FT4 and FT3 are the thyroid hormones and these tell us what our thyroid status is.

By reducing your Levo your FT4 will fall even further and you will start to experience hypo symptoms.

Show this to your GP and ask to stay on your current dose rather than reduce:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication 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 recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

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

[e-mail]

print it and highlight question 6 to show your doctor.

Unless, of course, you want to be on the lower dose.

[SlowDragon Administrator]

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Results don’t show over medication

Ft4 is only 65% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

So about perfect

You know you’re on correct dose for weight

nice.org.uk/guidance/ng145/...

1.4.2

Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.

Just testing TSH and Ft4 is completely inadequate

Suggest you get FULL thyroid and vitamins tested BEFORE considering adjusting dose levothyroxine

Medichecks or Blue horizon are most popular options

[SlowDragon Administrator]

Your results at diagnosis show thyroid has failed almost completely

TSH very high at 80 and Ft4 extremely low at 5

Likely low vitamin levels

Essential to test vitamin D, folate, ferritin and B12

You must get thyroid antibodies tested too

[Coco1230 in reply to SlowDragon]

thank you and is it ok that my dose has now been lowered to 50mg now x

[SlowDragon Administrator in reply to Coco1230]

Personally I wouldn’t reduce dose at all

Ft4 levels would reduce dramatically. Very quickly Ft4 would drop very low or below range

You might try splitting 100mcg dose taking half tablet waking and half tablet at bedtime

Gut issues more likely due to low stomach acid, very common when hypothyroid

Have you had coeliac blood test done yet?

I would recommend getting full thyroid and vitamins tested via Medichecks or Blue horizon before considering changing dose

[Coco1230 in reply to SlowDragon]

nope i havent got it done yet however the doctor said she wants to take my bloods for other things but didnt say what

[SlowDragon Administrator in reply to Coco1230]

Suggest you stay on current dose and request GP test vitamin levels and thyroid antibodies now

You can say you have read guidelines from Thyroid U.K. support group and NHS

You need thyroid antibodies tested for autoimmune thyroid disease (Hashimoto’s)

Vitamin D, folate, ferritin and B12

Assuming cause is autoimmune thyroid disease, then need coeliac blood test done too

[Coco1230 in reply to SlowDragon]

hey so online it says everywhere with my test results now it’s hyperthyroidism are you sure im not hyper now? tsh being 0.03 and t4 being 16.8

[SlowDragon Administrator in reply to Coco1230]

If your hypothyroid you can’t become hyperthyroid

You could be over medicated….but only if Ft3 was over range

Ft3 not been tested

Ft4 is only 65% through range

When levothyroxine dose is started TSH typically dips early on in treatment before slowly increasing over coming weeks/months

Likely you have Hashimoto’s too and probably low vitamin levels

Low vitamin levels tend to lower TSH

[Coco1230 in reply to SlowDragon]

oh okay because it felt as if i lost some weight but it was just the swelling i had on my body everywhere and my face. i just started 50mg been 3 days and my stomach feels better and i only need the toilet once in a day x

[Coco1230 in reply to Coco1230]

actually my stomach is still abit sore lol any idea if this will settle? yes will take blood tests for coeliac disease and vitamins etc

[greygoose]

Ah ha! So it was the TSH that was 80, not the FT4. Just as I thought.

So, what to make of your doctor's action in reducing your levo... One can only conclude that she doesn't know much about thyroid. You weren't over-medicated - or 'hyper' as she probably thinks of it! - your FT4 was quite high in range, but it was in-range. And, your FT3 would be slightly lower if you are a good converter. If not, it would be too low and you would still be hypo. But, you are only over-medicated if your FT3 is over-range. As it hasn't been tested, reducing your levo is a bit like playing Russian Roulet!

So, it would be a very good idea to get complete labs done privately. That way, you can compare your FT3 with your FT4 to see how well you convert. It could be that your symptoms were due to poor conversion, rather than anything else.

[Coco1230 in reply to greygoose]

why dont the doctors do ft3 also? and yes it seems as if im hyper with those test results

[greygoose in reply to Coco1230]

Good question! One can only surmise... They say it's not necessary because the TSH test alone 'tells you all you need to know'. Well, we all know that that is wrong!

Could be pure ignorance - they don't understand T3, what it is or what it does or how to interpret the results. In fact, here in France, doctors are not ashamed to admit they don't know anything about T3, which is why they don't test it.

But, under the NHS, it is the lab that decides what is tested and what is not, and the technicians are operating under NHS rules. Doubt a lab technician knows anything about T3, either. And, I think that the NHS has maybe decided that if people know their FT3 is low, they might start demanding to be prescribed it, and that would cost the NHS more money than they can afford. So, as far as they are concerned, where ignorance is bliss...

It is a mistake to divide symptoms into two cast-iron list of 'hypo/under-medicated' and 'hyper/over-medicated' symptoms, because an awful lot of them can be the same symptoms for both conditions. Weight-gain, fatigue, high blood pressure, heat intolerence to name but four. That is why we need full testing to confirm or refute our symptoms.

[Sarfran]

Hi Coco1230,I'm sorry that your GP seems to be a TSH follower. If I were you I'd fight hard not to have a dose reduction.

My TSH was 70 on diagnosis and it was the best part of a year before my symptoms started to settle. I think your doctor should be made aware that when you have been as hypo as you have it can take many months for your body to become more stable.

I still have problems if I do more than a couple of hours of anything physical in one day. Getting well can be a long term project!

Good luck and fight for what is right for you.

[Coco1230 in reply to Sarfran]

Hello, what dose were you on? did you have any changes etc? how long did it take for your symptoms to improve? did u have any sore stomach because of medication and loose bowels etc?

[Sarfran in reply to Coco1230]

I started on 50, then up to 100, then 112.5 (alternating days of 125 and 100) when I was okish but not perfect, then down to 108 (125 every 3rd day 100 for the other days) due to TSH drop. I'm now back on 112.5 as I didn't manage on the lower dose.I'm still not right but I can enjoy life much more than before.

I'm waiting to see an Endocrinologist which could well be months (I was had an appointment for November but it has been cancelled so now I'm back on the waiting list.....).

I use Monitor My Health for private testing as it is an NHS lab and my doc will take notice of these rather more than ones from a non-NHS lab.

I had loose bowels before diagnosis and I do get a sore stomach, however, it has improved since cutting out glutton from my diet. I did have wheat pasta and some bread last week and I paid for it! 😂😂

It took over 6 months before I began to feel more human. I did get very tearful and felt worse for a while once I started treatment but I believe that is part of your body and brain trying to readjust as it has been running on empty for so long...

There is hope, just take one day at a time and thank goodness that you have the vast knowledge of those on this forum to help you.

[Coco1230 in reply to Sarfran]

oh really?? i done the toilet like every 3/4 days lol so now loose bowel movements 3x a day and sore stomach isnt normal for me thats why she lowered the dose see how i go and then they can put me bck up slowly after my blood test results in october and if my stomach settles. yes i get tearful and anxious and that started recently wasnt sure if thats becs of medication or thyroid itself. also i get really breathless and warm so fast

yes thank you!

[SlowDragon Administrator in reply to Coco1230]

Extremely common to develop gluten intolerance when we start levothyroxine

Get coeliac blood test done via GP, plus vitamin testing

Assuming coeliac test is negative you can then cut gluten out

If coeliac test is positive, you have to remain on gluten rich diet until have endoscopy (max 6 weeks wait…officially)

[Sarfran]

Being warm was a new experience for me once I was treated! I think the contrast to being permanently cold can take us by surprise! I'd definitely try Gluten free for a few months to see whether it helps. It seems difficult at first but you should get used to it fairly quickly.

If you have an Aldi near you try their packets of dark rye bread instead of wheat based. I really enjoy it.

Good luck again.

[SlowDragon Administrator in reply to Sarfran]

On gluten free diet you can’t eat anything with Rye, wheat or Barley in

You could possibly be only wheat intolerant if you are ok with rye

[Sarfran in reply to SlowDragon]

You are absolutely right, I should have clarified that. I am wheat intolerant so can have rye bread but also ok on spelt bread which I believe may be something to do with it's being an older wheat type.

[SlowDragon Administrator in reply to Sarfran]

Most Hashimoto’s patients need to assume they can’t tolerate any gluten initially

Yes spelt is ancient grain and possibly has less gluten

[Imaaan]

Its absolutely insane that your doctor slashed your meds to half. Moreover, its imperative that you test your free t3 every bloodwork because it's the active hormone. I would highly suggest you learn everything that you need to know about the basics of hypothyroidism because relying on doctors wont cut it and I speak of over 20 yrs of receiving inadequate treatment.

Pls get yourself tested before Ramadan so you know what your baseline is going in and keep it in your records to compare and contrast moving forward in sha Allah. I have tests going back to 2009 in my personal records. Also it's really important to test out ferratin, folate, b12, vit D and your antibodies to get a full picture. Plus they help your thyroid meds work better. Relying on doc saying normal isnt helpful. If a range is 9-150 and you're at 9, that's technically normal but nowhere near optimal.

[Coco1230 in reply to Imaaan]

my doctor decreased my dosage because i was having a really sore stomach and loose bowels 2-3 times a day it was ridiculous! its been better on 50mcg. yeah i’m waiting for an appt to get tested my doctors don’t give an appt until 10-14 days after 😅

[Imaaan in reply to Coco1230]

The sore stomach and loose bowels could have been from the fillers in the meds, are you still on the same brand?

Still doesn't make sense that he/she did a drastic drop from 100 when they could have gone to 75mcg instead 50 mcg.

[Coco1230 in reply to Imaaan]

yeah true. its northstar brand. yep