Hi Im Female, 48, suffer severe me/cfs 18yrs. Test via GP TSH 7.20mu/l. Free T4 11.9pmol/l. Re test 3m. Should I try thyroid med?

So desperate to get well and won't give in. Concerned about trying nhs thyroxine due to being intollerant of meds. Any advice appreciated. Illness affects every body system, energy rating via Dr Myhills cfs profile 14%. Have to monitor heart rate for physical activity and time mental activity. Very debilitated. Need wheelchair when out. Suffer allergies/intollerances/chemical sensitivity. Exposed to DDT/Lindane for 11 yrs as child. Antibiotics (lots) as child due to recurrent tonsillitis. Glandular fever. Miscarriages. Pyelonephritis. Fainting. Poor sleep even as child. POTS. hypertesive since going through menopause at 42.

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  • Hi.... Please get your GP to test you for Hughes Syndrome in view of your recurrent miscarriages just to rule it out, many patients have severe chronic fatigue, thyroid issues and Sjogrens Syndrome with this, and relatives who have had other autoimmune disease or sudden blood clots etc. Just get tested to rule it out. Condition otherwise known as Antiphosholipid Syndrome, and often not picked up. Come back to me by private message or on here if you think you want more information. MaryF

  • You poor thing. Just left to get on with your continuing ill-health.

    Mary's suggestion is good and at least it would rule out or confirm one other autoimmune condition. I am sorry you had recurrent miscarriages etc and that you are now in a wheelchair.

    With your TSH of 7+ you must feel awful. In the USA you would be treated with a TSH of 3. Not in the UK where it is stated your TSH should reach 10. Some doctors do medicate if lower than 10 if they take clinical symptoms into account. Has your GP taken a Vitamin B12, Vit D, iron, ferritin and folate. If not ask for these as they are usually deficient in autoimmune conditions.

    If you can put the ranges of the blood tests as labs differ and it makes it easier for members to comment.

    The most synergistic thyroid hormone replacements would be Natural Dessicated Thyroid Hormone and a trial should not be a problem.Your GP definitely wont prescribe so you may have to purchase it yourself. A member who does the same will send you a private message. We don't post information on the open forum.

    Best wishes

  • Hi thanks for both your replies and kindness. I will look into the hughes syndrome Maryf. The ranges are TSH 0.2-4.0 and free T4 9.0-19.0. My gp is lovely and supportive but won't go out ofnhs guidelines so am being retested in 3 months.

  • Will look into the other blood tests too. Av been on B12 injections through Dr Myhill. All private stuff so expensive. Am wondering whethet to send her my thyroid results. She may get me the dessicated treatment. Again its the cost :(. Cant tell you alk I've tried over the years- even gettin stuff from US and convincing my dentist to take out amalgam fillings. All to no avail.

  • With a tsh that high i am surprised you are functioning at all. I would say get onto ndt asap. Also, if you have root canals or mercury fillings, get them out. Avoid fluoride like the plague.I don't understand why you are not on thyroid replacement as even for nhs standards your tsh is high. Most people need tsh of around 1 to feel well, i was debilitated at 4

  • Hello, I am interested in whether you actually saw Dr Nyhill or if there is a profile online?

    Alot of cfs/me patients (aswell as fibro) have problems with thyroid hormones/resistance even when the labs are normal. In his book Type 2 Hypothyroidism Dr Mark Starr talks about how he started using Dessicated thyroid with his pain patients and is convinced that cfs/me is related to low mitochondrial function due to an inability of the cells to utlize thyroid hormone. Dr Lowe (since deceased) also used dessicated and high dose T3 along with a full metabolic rehab program for fibromyalgia (but likely this will extend to cfs and me). Another possible good resource is Terry Wahl's work on MS which can also be used for your conditions. It is diet and supplement advice to get the mitochondria to work properly and make energy more efficiently.

  • Hi Bluedaffodil thanks for your reply. I and my family now feel its best to email my lab results to my private doc Dr myhill to see what she thinks rayher than waiting 3 months til I have a re test on nhs. My gp was gine about me sending results. I kno from her treatment protocol dr myhill will want me to try thyroid replacement just hppe she can get the natural stuff, so sensitive to meds. Is thyroxine more problematic with side effects than the dessicated? Had my fillings removed years ago but had had 8 large ones since I was a girl:(. Hi suzannai thanks for ur reply. Yes I have seen Dr myhill and had all her blood tests 4 mitos and it showed 14% energy and DNA damage and pesticides in blood even tho not exposed since 11. She put me on paleo diet and various supplements. I stick to diet and keep tryin supps and totatin etc due to allergy/ sensitivity. She big believer in thyroid probs too like doc u mentioned. U can see all she thinks online as has large help website. Just alll costs. Thousands spent over yrs. Wish natural thyroid med on nhs but my gp says no.

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