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Thyroid UK
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Hi

I am newly registered and posting for my sister who was diagnosed hypothyroid in 2011. She is 32 years old and has lately been feeling like giving up since she feels no better and her GP and endo are not taking her symptoms seriously, her list of symptoms are below:

Splitting nails

Dry eyes and mouth

Constipation

Tiredness

Puffy eyes

Goitre and horizontal creases across neck - thyroid related?

Weight gain

Breathlessness

Cold intolerance

Feeling off balance when going into brightly lit places

Eyelashes and eyebrows looking sparser

Loss of appetite

Pins and needles

Her endocrinologist has been adjusting her dose from 175mcg levothyroxine to 150mcg levothyroxine/175mcg levothyroxine on alternate days even though she was not overmedicated at the time but her GP has been intervening and trying to change her dose about as well. Results on 175mcg levothyroxine before adjustment are below.

01-NOV-2017

TSH *0.03 MIU/L (0.2 - 4.2)

FREE T4 *40.3 PMOL/L (12 - 22)

FREE T3 *11.2 PMOL/L (3.1 - 6.8)

THYROID PEROXIDASE ANTIBODY *208.5 IU/ML (<34)

THYROGLOBULIN ANTIBODY *377.3 IU/ML (<115)

She feels like she has been messed about a lot because her GP has been changing her dose without consulting with the endocrinologist. She really has no idea what she ought to be doing. Advice and support would be welcome, thank you in advance.

32 Replies
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LouiseC1966

First of all, your sister must not allow her GP to alter her dose. She must tell her GP that the endo has decided her dose and she will not change it unless the endo directs her too.

THYROID PEROXIDASE ANTIBODY *208.5 IU/ML (<34)

THYROGLOBULIN ANTIBODY *377.3 IU/ML (<115)

Has anyone told her that the high antibodies confirm autoimmune thyroiditis aka Hashimoto's? (The goitre will be related to this.)This is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. Your sister needs to read, learn, understand and help herself where Hashi's is concerned.

It's quite possible that her endo is a diabetes specialist, most of them are, and doesn't know much about treating hypothyroidism anyway, so knowing anything about Hashi's is probably off the radar!

She can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. Some of her symptoms can be indicative of low nutrient levels so it's important to have the following tested:

Vit D

B12

Folate

Ferritin

and if Ferritin is low:

Iron Panel

Full Blood Count

If any of these have been done, please post results with ranges, say if supplementing, how long for and what dose.

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Thank you, she has real difficulty becoming assertive. She is very shy and isn't able to stand up for herself. She has had a phone call from her GP surgery to say her latest results have come back abnormal. Which ones they are she doesn't know but she thinks they are the thyroid ones. She has been offered a phone appointment with a GP on Tuesday. She also has folate anaemia and iron deficiency anaemia but has given up trying to get correct treatment for these.

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The high antibodies shows she has autoimmune hypothroidism (Hashimoto's disease). This would also explain her goitre. She is fullly medicated on levothyroxine and any increase would not be beneficial. If she is still seeing the endocrinologist she could ask for a trial of liothyronine (L-T3) as the levothyroxine (L-T4) only treatment is clearly not working. This is very difficult to get prescribed but it's worth pushing hard for it. If you can it would help if you could go along to her doctor's appointments for support as it's very difficult to be assertive when one is hypothyroid.

Since she gets breathless her doctor should check her ferritin level as iron deficiency anaemia is very common in hypothyroidism and the iron in red blood cells helps carry oxygen around the body.

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Thank you, she has real difficulty becoming assertive. She is very shy and isn't able to stand up for herself. She has had a phone call from her GP surgery to say her latest results have come back abnormal. Which ones they are she doesn't know but she has been offered a phone appointment with a GP on Tuesday

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She also has iron deficiency anaemia and folate anaemia

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Is it possible for you to go with her to doctors?

It is often very effective, because they tend to take it more seriously and also you can act as witness.

It is absolutely essential to get vitamin levels correct

Thyroid hormones can not work when vitamins are too low

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

Post her vitamin results and members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

Her TSH needs to be as low as possible (ideally without being suppressed) FT4 towards top of range and FT3 at least half way in range

Once vitamin levels are good and gut healing gluten free, if FT3 remains low then she may need small dose of T3

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"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)."

You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

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Is it possible that the results I quoted are as a result of a Hashi flare?

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Unlikely. A Hashi's flare would give you results something like FT4 33 and FT3 8, or something like that. Her FT4 isn't over-range, and her FT3 isn't even mid-range. The TSH is suppressed, so she could have had a flare not long ago, from which the TSH hasn't recovered.

Her problem is that she isn't converting very well - which often happens with Hashi's - and the further she raises her levo, the less well she will convert to T3. What she really needs is a slight reduction in her levo, and some T3 added to it, to lower her FT4 a little, and increase her FT3. But, she'll have to see an endo for that - a GP cannot initiate the prescription, even if he is willing - which most of them aren't!

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Hi well her current results show under medication

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FT4 and FT3 both over range, now they are low again. Thanks

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Current results TSH *11.6 MIU/L (0.2 - 4.2)

FREE T4 *10.4 PMOL/L (12 - 22)

FREE T3 3.2 PMOL/L (3.1 - 6.8)

Reply

Louise, this is ending up to be a bit of a muddle, and keep changing the numbers doesn't help! You can't just alter your results in the main post without mentioning it because the responses you've now had don't make any sense, and everyone is going to get very confused!

So, she was over-range, she's now under-range. She had a Hashi's 'hyper' swing, but that's over now, and she's hypo again. And, what she needs is an increase in her dose of levo. There's nothing magical or mystical about it, that's the way Hashi's work. It's just a pity doctors don't understand it!

Please, next time you post, do give all the details straight off. They are all important, and help us to help you. :)

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Sorry GP gave me the wrong results

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Yes, I realise that, but you could have informed us that you were changing the question! Are we just supposed to guess? :)

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No I just didn't think

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OK Please think, next time. :)

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The 1st November results are actually fine, FT4 and FT3 both in range although FT3 far too low showing poor conversion of T4 to T3, and she would benefit from the addition of some T3. The doctor has had a kneejerk reaction to the suppressed TSH, but as this is a pituitary hormone and not a thyroid hormone, it's just low because there is adequate thyroid hormone being detected by the pituitary.

A Hashi's flare would most likely show a high FT4 and FT3 (as in high over range) as well as suppressed TSH.

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FT4 and FT3 both over range

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They weren't in your original post which is what I referred to, and the only ones you'd given when I posted my reply, you also say in that post

Her endocrinologist has been adjusting her dose from 175mcg levothyroxine to 150mcg levothyroxine/175mcg levothyroxine on alternate days even though she was not overmedicated at the time

I replied on the information given at the time

"The 1st November results are actually fine"

and Greygoose replied a few minutes earlier than me saying

"A Hashi's flare would give you results something like FT4 33 and FT3 8, or something like that. Her FT4 isn't over-range, and her FT3 isn't even mid-range"

so we were both seeing the same thing and responded accordingly and correctly to the results that were there at the time.

It seems as though you have now edited your original post and put different results showing over range.

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GP gave me wrong results

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But we replied according to the information we were given originally. It would have helped if you had put up a post along the lines of

"Oops, results in my first post are wrong as the GP gave me the wrong results, sorry about that. These are the correct results, further comment welcome"

rather than just editing the first post without mentioning it. Rather made Greygoose and I look as though we didn't know what we were talking about.

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Sorry will do this now

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I can't change the post now

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Not to mention jimh111, who said much the same thing as us!

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Current results TSH *11.6 MIU/L (0.2 - 4.2)

FREE T4 *10.4 PMOL/L (12 - 22)

FREE T3 3.2 PMOL/L (3.1 - 6.8)

Reply

She's undermedicated now. What dose is she on?

As explained, the antibody attacks cause fluctuations in test results and symptoms.

When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. These are called 'Hashi's flares' or 'swings'. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. The hyper swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Dose adjustment at these times can help.

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She is on 50mcg

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Well, she needs an immediate increase. If she has enough Levo I would increase it myself. How long has she been on 50mcg now? If only a few days then she could possibly go back to her previous dose, otherwise she might have to increase gradually, 25mcg at at time with retesting every 6 weeks.

She has to get her TSH down to around 1ish and her Free Ts back up to nearer the top of the range, if that is where she feels well.

If she can't be assertive, then she needs someone to go with her to her appointments. I never accept telephone appointments for discussing thyroid test results, in my experience the doctors do all the talking and talk over you when you want to put something across. You can't have a discussion about where levels should be and why unless you're face to face.

She needs to learn and understand about her condition and be in control. And she can't just give up on getting correct treatment for the iron deficiency anaemia or folate anaemia. Does she want to stay ill?

Post her results with ranges for her vitamins and minerals, say what she is supplementing, the dose and for how long. We can make suggestions and give pointers if necessary.

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She has been on 50mcg levo for 4 weeks, she has a vit D level of 13

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Do I post results here or on new post please? Vit D on a new post already

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If you put them here all relevant information will be together. But if you make a new post link back to this one or you will be asked questions that have been asked and answered here.

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Current results TSH *11.6 MIU/L (0.2 - 4.2)

FREE T4 *10.4 PMOL/L (12 - 22)

FREE T3 3.2 PMOL/L (3.1 - 6.8)

These results show she is hypothyroid and needs levothyroxine treatment (or an increase if she is already taking it). If I understand correctly her blood test results have been jumping around and her GP has been adjusting her dose to get her stable. In autoimmune hypothyroidism (which she has) the thyroid can flare up now and then which makes it very difficult to keep stable hormone levels. Eventually the thyroid dies off and things settle down. If they can't get her levels stable they should use 'block and replace'. This is where she is given one medication to suppress the thyroid along with levothyroxine. The GP may not be aware of this but an endocrinologist should. The GP could telephone the endocrinologist to get advice.

I would ask for a personal appointment rather than a telephone one and if your sister is agreeable go along with her.

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