Need Help!: Since 5 months ago, I've been told by... - Thyroid UK

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Need Help!

Fahad888 profile image
7 Replies

Since 5 months ago, I've been told by a doctor that I have hypothyroidism due to an auto-immune disease (Hashimoto). Before I visit the doctor, I started developing many ridiculous symptoms including forgetfulness to the point that I feel I'm close from forgetting my name, severe fatigue, fat increase, weakness, loss of concentration to the point that I lost my self-confidence.

My first blood test results were as follows:

Vitamin D (25-OH-Cholecalciferol)25Deficiency: < = 50 Insufficiency: > 50 - < 75 Preferred level: > = 75

TSH 9.680(0.27 - 4.2)

Vitamin B12 (Cyanocobalamin)247(141 - 489)

Anti ThyroPeroxidase Abs (TPO)516.39(< 5.61)

Free T4 (Thyroxine)11.8 (12-22)

I've been put on Levothyroxine 25 and eventually increased the dose until I reached 100mcg throughout 3 months. During that period, I suffered from really bad symptoms that I ceased taking the levo including even worse memory loss and freaky nightmares. I suffered from the levo and I can feel the bad symptoms right away. When I tried to take my levo at night before sleep, I felt better and many of the levo symptoms (not the disease symptoms) have been reduced! I complained to my endo that I never felt any better and he reduced my dose to 75mcg before he increased it back 2 months ago to 100!

Please help me out because I'm close from getting crazy and not sure if I can get back to normal:/ Your help are much appreciated!

My latest blood results are as follows:

Vitamin D (25-OH-Cholecalciferol)68 (50 - 150)

Free T3 (Triiodothyronine)4.97 (3.1 - 6.8)

Anti ThyroPeroxidase Abs (TPO)402.76(< 5.61)

Vitamin B12 (Cyanocobalamin) 222 (141 - 489)

TSH 4.650(0.27 - 4.2)

Free T4 (Thyroxine)17.3 (12 - 22)

The doctor is insisting that my current measurements are good and I don't need to do anything but I don't feel good at all! I'm also taking 10,000 IU Vitamin D a day.

Thank you all in advance for your advises and help!

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7 Replies
SeasideSusie profile image
SeasideSusieRemembering

Oh dear, another doctor who is rather clueless. I can't see why your doctor thinks your current measurements are good when your TSH is over range and your free T3 and T4, although within range are quite low. Ideally your TSH should be around 1 or lower and your free Ts in the upper quarter of their ranges.

Your Vit D could do with coming up to 100+ and your B12 at the top of the range. The B12 range seems quite low, in Japan their range starts at 500, and my Blue Horizon test range was 191-663 and it's generally considered that around 900-1000 is the best place to be. The best B12 supplement is sublingual Methylcobalamin not cyanocobalamin.

Your TPO Abs are still high. I don't have Hashi's but it's generally advised to go scrupulously gluten free to dampen down the antibody attacks, some people also find they need to be dairy free too.

It seems as though your thyroxine was increased rather quickly. It's normally a starting dose of 25 or 50mcg, retest after 6 weeks and an increase of 25mcg, then retest after another 6 weeks and another increase of 25mcg if necessary, and so on.

Unfortunately it's not a quick fix and it takes time to gradually get to the right dose where your symptoms ease but with Hashi's you will have fluctuating symptoms with the antibody attacks. Hopefully someone with more knowledge of Hashi's will come along and give more information.

shaws profile image
shawsAdministrator

Seaside Susie has given good advice and your doctor is another who appears to think that for us who are hypothyroid are on enough levo if the TSH is anywhere in range, which is wrong as we feel best when TSH is around 1 or lower.

We have to read, learn and be educated in order to get back to good health.

If hashimoto's (I am hypo) it has been stated that going gluten free helps reduce antibodies. I shall give yu a link:-

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

thyroidpharmacist.com/

Clutter profile image
Clutter

Fahad888, you are undermedicated. Most people will be comfortable with TSH around 1.0 with FT4 in the upper quadrant of range and FT3 in the top third. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.warvill@thyroiduk.org.uk for a copy of the Pulse article if you would like to show it to your endo.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Fahad888 profile image
Fahad888

Thank you guys for the valuable and very helpful information! SeasideSusie does that mean I should increase my dose a bit until my tsh goes to below 1? What should i do to increase my Ts? Is it just by slightly increasing my levo dose? Sorry..im not fimiliar with the results:/

SeasideSusie profile image
SeasideSusieRemembering in reply to Fahad888

Fahad888 - when was your latest thyroid function test done? Is it your GP or your Endo who is saying your current levels are good and you don't need to do anything?

Some Endos are now aiming for their patient's TSH to be 1 or near, and it would be helpful if yours thinks like this. If he does then you'd have a bit of chance of your GP accepting that the Endo knows more than him and following his protocol.

If it's your GP who says your level is good, you could be on dodgy ground just increasing your dose yourself so it may need some careful negotiation unless you can tell him categorically that the Endo is aiming for a TSH of 1. You could discuss the symptoms you are experiencing now, remind him that your TSH is still over range and point out that your free Ts are quite low in their ranges and that it all points to trialling a further increase in your dose and monitoring with a new blood test after 6-8 weeks. As your TSH lowers then your free Ts should, theoretically, rise.

Also useful is information from Dr Antony Toft (past president of the British Thyroid Association I think) from a little book he wrote for the Family Doctor Series "Understanding Thyroid Disorders" which you might still be able to obtain. He said:

"Judging the correct dose of thyroxine

Your GP or thyroid specialist will usually prescribe a dose of thyroxine that raises the fT4 and TT4 to the upper part of the normal range and reduces the TSH level in the blood to the lower part of the normal range. Typical results would be a fT4 of 24 pmol/l or TT4 of 140 nmol/l, and a TSH of 0.2 mU/l.

In some patients, a sense of well-being is achieved only when fT4 or TT4 is raised, for example 30 pmol/l or 170 nmol/l, and TSH low or undetectable. In this circumstance, it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism."

Other members might have a link to an article by Dr Toft in Pulse (an online magazine for doctors) that says virtually the same. Unfortunately I don't have that link.

PS I've just seen that Clutter mentioned the article in Pulse magazine and suggested you email Louise for a copy, it could be very helpful for you to show to your doctor.

Fahad888 profile image
Fahad888

Clutter...Thank you very much for you helpful input!

Fahad888 profile image
Fahad888

Thank you guys for your advises. Actually I visited 2 endos and both ignored my symptoms and said you should feel OK...I found that the article that you guys are referring to (Thank you Clutter) is so helpful and I will follow these ranges because i never felt any better since i started.

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