Hi, I was diagnosed with fibromyalgia 5 years ago after suffering many symptoms, including muscle aches, numbness, tingling, digestive issues, headaches, dizziness, chronic fatigue....also developed vitiligo.
I had a routine blood test for my thyroid but was told no problem there, even though I suspect there is.
My daughter has hypothyroidism as did my mom.
I am feeling very poorly at the moment and just not sure where to go and get more in depth testing. I am suffering with severe chills and sweating, hair falling out and very dry.
Anyone have advice who I can see privately in UK, West Midlands area?
Before you spend any money seeing anyone privately, get some private tests done - a full thyroid panel with vitamins and minerals. Then post your results on here for members to comment.
Recommended tests to cover everything you need at this stage:
SeasideSusie, do you happen to know the reference ranges for the Blue Horizon test kit? I've been using Doctor's Laboratory test kits through my private hormone doctor, but they cost around the same as these two but only provide TSH, T4 and T3. These would allow me to check up on my iron too. But if the reference ranges are very different my doctor probably wouldn't like it.
That's great SeasideSusie. Your test results match mine, which are done by the Doctor's Laboratory. I think I'll order a kit today for the money off deal and hold it for my next test.
Welcome to our forum and your picture is lovely. Who would suspect you weren't feeling well.
Fibromyalgia is caused by Thyroid Hormone Resistance and one of our Advisers ran the Fibromyalgia Research Foundation (he is now deceased unfortunatley - through an accident). However he stated that those with Fibro, ME of CFS recovered when they were prescribed T3 alone.
Members of your family probably were prescribed T4, i.e. levothyroxine for hypothyroidism. T3 has been bannedat present in the NHS but we can source our own.
So, the first thing you have to do is get a Full Thyroid Function Test - GP is restricted to what he can test. We have several private labs that will do the following for you and I will give you a link.
First, make sure you are well-hydrated a couple of days before a home pin-prick blood test.
The test has to be at the earliest possible, fasting (you can drink water. If you were taking thyroid hormone replacements you'd allow a 24 hour gap between last dose and test and take afterwards.
This method keeps our TSH at its highest as doctors are apt to only look at the TSH result and nothing else.
You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
GP should do B12, Vit D, iron, ferritin and folate. Everything has to be optimal 'not just somewhere in the range'.
Thyroid antibodies are important as they distinguish between hypothyroidism and an Autoimmune Thyroid Disease called Hashimoto's but treatment is the same as for hypo.
Always get a print-out of your results with the ranges. Ranges are important as labs differ and it enables members to respond to the results. Your doctor's nurse might draw blood for you. Those who've done their own pin-prick tests might advice how they got the best blood draw.
If you email Dionne at Thyroiduk she has a list of sympathetic doctors. email below:-
Put your results on a new post for comments from members. Re daughter - her TSH should be around 1 or lower - some doctors think when it has reached 'somewhere' in the range that's fine.
Thank you so much ladies for your advice. I will take it on board and send off for the full thyroid panel, makes sense to do that rather than pay to go private.
Shaws, my daughter takes thyroxine but, they are constantly having to change her dose as they have a hard job regulating it for some reason. I was very interested in what you said about fibromyalgia and the T3 link. My daughter kept saying that a lot of my symptoms were similar to hers, she also has Crohns disease!
Thank you also for the compliment, although I think when you look ok the doctors don't get how bad you actually feel.
Will post the results on here when I have them and see what you make of them!
Does your daughter have Hashimotos ? Could be the reason for fluctuating results. Is the GP going by the TSH result or does he test the FT4 & FT3 too ?
Like Crohns - Hashimotos is auto-immune. I too have both. Diagnosed at 27 with Crohns after Gut TB & then diagnosed with Hashimotos at 59 some 13 years ago. It as been a bumpy ride to wellness 😊 Has your daughter had tests for B12 - Folate - Ferritin - VitD ? All need to be optimal to feel well and for thyroid hormones to work well.
Oh I was diagnosed with Fibro in 2000 before thyroid diagnosis in 2005 !!
My daughter was diagnosed with underactive thyroid after having her first child but I wonder if it's hashimotos. They are constantly upping her meds, then dropping them again. I know she said her gp has been scratching her head. I'm not sure what they look at in her blood tests, will have to ask her, not even sure they tell her. I know she has to go for regular blood test, then doctors ring her and say she has to up her dose or drop it.
Sorry to hear you're suffering, so many of these auto immune diseases seem to go hand in hand, and are not easy to get diagnosed with.
My son had behcets, Ill all his life, diagnosed at 15. I was made to feel like a paranoid mom. He passed away 6 years ago age 19.
Really not suffering - have worked hard at sorting everything - following advice here over 7 years. Lots of reading too ! You can click onto anyone's username and read their Profiles if they have done one ! - only takes a couple of minutes.
Yes Docs know very little about thyroid and treat patients badly as they go only by the TSH - hence your daughters dose is up and down. Not a good thing for the body either. Everyone needs the FT4 and FT3 result as well to understand fully what is going on. That way I am sure your daughter would be able to stabilise her dose. Hope everything goes well for her ...
Your daughter also needs full Thyroid and vitamin testing then. Would suspect she has Hashimoto's, diagnosed by high thyroid 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, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you and she have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working .
Crohn's will be significantly affecting vitamin levels too
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
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)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ok thankyou, will speak to my daughter. She is 8 months pregnant now so she won't be able to do her testing for a while.
I've started a gluten free diet this past week, I will try anything to stop the problems I'm having in my stomach, bowel etc.
I've been on omeprazole for 5 years now and can't get off them, if anything I have just had to double the dose plus take gaviscon (reason for the gluten free diet).
Hi Beckyrowls123, unfortunately not many people in this country have heard of Dr. Coimbra. He is a Brazilian doctor and scientist who has been successfully treating autoimmune conditions for the past 20 years. He is particularly noted for his treatment of MS, psoriasis, vitiligo and I am now seeing testimonials from people with Parkinson’s and arthritis. He has corresponded with me personally about a friend who has progressive MS; so kind of him to take up his valuable time. I’m sure that you have now found out a lot about Dr. Coimbra and his Vit D Protocol. Good luck.
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