My daughter had been feeling ill for a few years, she did get glandular fever badly in her teens and looking back never recovered. 3 years ago she was diagnosed with hasimoto and was put on thyroxine, she had awful side effects and this has continued. I have tried an endo privately but sadly he didnt turn out to listen much to her, so stuck with the GP currently and whilst my daughter tells her how ill she feels and how her bloods are going in the wrong direction despite her taking the meds she lies in bed day after day, crying with cramps, flushing, tiredness we cannot comprehend and she has no quality of life. Her latest THS level is 9.4 it increase every test, currently on 50/75 alternating daily thyroxine. The palpatations are frightening and so is the weight gain - what can I do to help my daughter? she has no quality of life and cold never hold down a normal job.
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Rose44
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Your daughter is very undermedicated to have TSH 9.4 on 50/75mcg Levothyroxine and that is why she is gaining weight, having palpitations and feeling awful.
Why has her GP not increased dose? Is there another GP at the practice she can see?
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher @thyroiduk.org if you would like a copy of the Pulse article to show your GP.
Ask the GP to check ferritin, vitamin D, B12 and folate which are often low/deficient in hypothyroid patients and cause symptoms which can be confused with hypothyroid symptoms.
There are 4 makes of Levothyroxine in the UK, Mercury Pharma, Actavis (aka as Almus and NorthStarr) and Teva. If the brand she is taking doesn't suit you daughter should ask the pharmacist to dispense one of the others.
There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
Thank you so much for your reply, how interesting and helpful - the GP did try putting her on anti depressant but if we could treat the cause then she wouldnt be so down.
It makes me cross that GPs prescribe mind altering anti-depressants rather than treat the root cause, her undermedication. I would make a written complaint to the practice manager.
Rose44 Your daughter is seriously undermedicated to have a TSH of 9.4. Has she had FT4 and FT3 tested? If so can you post the resuts, with reference ranges (the ranges vary from lab to lab so we need them to intepret the results).
50/75mcg Levo alternate days is a very low dose, basically a starter dose. As she has had side effects, has she tried a different brand of Levo, or even liquid Levo? Her GP shouldn't just leave her to suffer side effects, there are alternatives to try.
As she has Hashi's, is she addressing this? Most doctors don't attach any importance to antibodies and don't understand what Hashi's can do. She help herself by learning all about it and the first thing she can do is 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.
Hashi's and gut/absorption problems tend to go hand in hand and very often low nutrient levels or deficiencies are the result. It's very likely that her nutrients are trashed and may be causing some of her symptoms, and it also means that thyroid hormone can't be absorbed. So if not already done she needs the following tested:
Vit D
B12
Folate
Ferritin
and if Ferritin is low then:
Full Blood Count
Iron Panel
There are many pieces to the Hashi's/Hypo jigsaw so we need to get a full picture to see what's going on and hopefully we can find where her problem lies.
What great help you both have provided, I cannot than you enough and will get it addressed as soon as I get home - these are her blood counts
she had all the symptoms and was put on the meds before the bloods went out of control - now she is on the meds and the bloods are not stabilising..... and she is struggling constantly
We need to see full results including the reference ranges. As ranges vary from lab to lab then just saying her FT4 was 15.4 unfortunately doesn't mean anything. With the range at my surgery it would be very near the top, with the range from a common one we see on her it would be close to the bottom.
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
About 90% of all hypothyroidism in Uk is due to Hashimoto's
With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones 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
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
Levo dose should be high enough to lower TSH to around one and FT4 towards top of range and FT3 at least half way in range.
She is currently very under medicated. Dose is increased in 25mcg steps. Retesting after 6-8 weeks.
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.
My son had glandular fever about 20 years ago and was badly affected. At that time I had read about a complementary doctor who was treating it and took him there. As far as I can remember they looked for and found some very low vitamins and minerals, such that he had to have a course of injections to bring his levels up to normal. I don't remember what particular ones they were.
Please get your daughter to a qualified nutritionist who will test her levels and suggest appropriate treatment. You can find someone near you if you go to the website for The British Association for Applied Nutrition and Nutritional Therapy (BANT) at bant.org.uk/ and their page for finding a practitioner
Improving nutritional levels will also help thyroid medication to work better. Various vitamins and minerals are mentioned on posts here, but a good nutritionist will test for a wider range.
Nutrition is terribly important. Get that sorted out and your medical problems will show up more clearly.
Here is another interesting page from Dr Myhill's website
this is also so very helpful - everyones kindness on this site is overwhelming. What I failed to mention also on ultrasounds my daughters' thyroid is covered in cysts, and is visibly swollen
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