i have had an under active thyroid for over 4 years now .
no help or understanding from the doctors in every sense.
i am quite a strong character which has helped me get through the really bad days. from being relativity slender i am now very chunky bordering on really chubby.
i have recently had really bad pains in all of my joints and sharp stabbing like pains in my feet. i went to see two different doctors both examined the outside of my feet even though the pin is internal and really extreme. i also get really really tired an keep falling asleep at my desk. mu levothyroxine has been dropped form 200mg to 150mg
it has been suggested by a work colleague that my autoimmune thyroid is very similar to fibromyalgia which is also an autoimmune disease.
i have scalp psoriasis which again is autoimmune . i have had this for about 5 years and is so horrible and painful. it really restricts the clothes i wear and how i constantly keep brushing dead skin off myself and leave a trail of flakes. this came about a year before my thyroid diagnosis which was misdiagnosed and caused me to have not one single hair left on my eyebrows. i always had really thick eye brows all my life. the doctor i seen last month commented that my tattooed eyebrows looked really weird
i answered that i had no choice due to my thyroid losing my eye brows
he was flabbergasted and said that he had never heard of such a thing
i have got thick hair though which thankfully i have never lost
just my eyebrows. completely bald see picture
at that point i decided i am going to see a private no matter how much it costs and would like a reputable one within or around Birmingham so would be grateful for any recommendations
thanks
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Mishymoo22
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Before spending money on a private doctor, it would be wiser to get full thyroid/vitamin tests done. Muscle and joint pains could be low Vit D, burning feet could be low B12.
What you need testing are
TSH
FT4
FT3
Thyroid antibodies
Vit D
B12
Folate
Ferritin
Consider either of the following private test (both labs are recommended by ThyroidUK), which can be done by fingerprick or venous blood draw if preferred at extra cost:
Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code TUK20 before the end of May for 20% discount, thereafter THYROIDUK for a 10% discount on any test not on special offer.
Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:
For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Serum B12. Medichecks does Active B12.
Serum B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
Post results and reference ranges on the forum for members to comment, you may be able to go forward without paying out for a private doctor.
thank you for taking the time to reply and also for the helpful information you have given me.
i got my results last week from the doctor after demanding all the tests that are mentioned by other members on here. The receptionist made me wait for 40 mins for blood tests to be printed but i just sat and read my book i cannot understand them but i shall post them on here tomorrow. i will still go for the other tests but i would appreciate if you could look at these results .
The receptionist was being awkward. I go into my surgery, ask the receptionist for a print out, it's done immediately and in my hand in less than a minute. Some like to think they're superior, I think it's a form of bullying.
I have hypo/Hashimoto’s and fibromyalgia ( plus insulin dependent diabetes)...fibro was diagnosed after years of pain/ exhaustion and other ailments ruled out by blood tests and various scans( xrays, MRI etc), then a consultant rheumatologist tested for paired pain points to diagnose. So it’s a slow process to get fibromyalgia diagnosis, and then there is no ‘cure’ only a variety of painkillers. I’d consider other causes like low b12, Vit D, ferritin and folate levels, especially since you have Autoimmune disease which is characterised by poor gut absorption...so get these tested, they need to be optimal in upper end of ranges, and treat/ supplement ( and maintain levels).
You will find Dr.Lowe’s archived work/Q&As on the Thyroid U.K. website...he believed that many fibromyalgia sufferers in fact had undiagnosed or undertreated hypothyroidism, and treated his patients on high levels of T3. A route I went down for a year, without success...so testing vits/ mins best first and easiest priority, while waiting for fibromyalgia diagnosis of exclusion! Even if you try adding T3 you need your vits/ mins optimal first.
the pain in my feet is unreal. i had a really bad day yesterday with it
i felt so low and my scalp psoriasis is constantly itching at me . also i have a wardrobe of clothes that no longer fit . i could just lay down and not get up but we have to keep going
My paresthesis, diagnosed FM, & most skin problems cleared up when I started taking NDT. T3 stopped many of my ill health issues, but something in NDT prevents eczema, dermatitis, & split skin on my lips & heels.
Make sure your micronutrient intake is good, including minerals for hair. Perhaps try sublingual methylcobalamin to see if this reduces your parenthesis. There are lots of posts & replies re the cofactors we need to feel better. Missing or low levels of one will throw a spanner in our works.
Pains in the feet are very common in people with hypothyroidism. The condition is known as "plantar fasciitis". I doubt that many doctors know the connection between hypothyroidism and plantar fasciitis.
I had this condition. Putting my feet to the floor and standing up when I got out of bed in the morning was excruciating, and when I walked downstairs first thing in the morning my ankles wouldn't bend without severe pain. Usually in my case the problem would diminish and disappear over the first hour or two of each day, then would be back again, just as bad, the next day. If I sat for a long time without bending my feet and ankles the pain would sometimes come back then as well.
Improving my vitamin and mineral levels and improving my Free T3 levels cured the problem.
I don't know whether alcohol has any effect on the condition. Before I knew anything about my thyroid problems and how they should be treated I gave up alcohol as one of my attempts to fix my poor health.
Since my health problems were largely caused by low thyroid hormone levels and low iron, giving up alcohol didn't help very much, but I did get some minor benefits from giving up alcohol so I stuck with it.
You mention that your thyroid condition is autoimmune - were you diagnosed with Hashimoto's by ultrasound or by positive antibodies testing?
However, the point I wanted to make is that there is no concensus of opinion that fibromyalgia is an autoimmune condition, whilst there are some theories that it definitely isn't, so it seems the jury is still out on that. This is an interesting lay person's look at the issues, including a video of a one minute primer on fibromyalgia painscience.com/articles/fi...
and this is an equally interesting interview with Prof Frederick Wolfe, a US expert in the disorder, discussing the problems of diagnosis and expressing his views that there are many factors that produce the fybromyalgia symptoms – some are psychological and some are physical - and that it exists on a continuum.
I think you need T3 either added to T4 or T3 alone. I know they will not prescribe in the UK due to cost. T4 (levo) is an inactive hormone and has to convert to T3. T3 being the Active thyroid hormones, needed in our millions of T3 receptor cells
One our Thyroiduk's Advisers ran the Fibromyalgia Research Foundation. I don't have a link but this is what he stated about fibro:-
"October 12, 2010 Question:Are fibromyalgia and hypothyroidism really linked? I think that they are. I have fibromyalgia and I also have weight gain, although I eat very little and have body swelling and many other symptoms of hypothyroidism. Conventional thyroid lab tests come back as normal, but I know in my gut I have a real thyroid problem. How can I get a more sophisticated, discerning thyroid testing done? I am in the UK? Thank you very much for your time.
Dr. Lowe: Most patients fibromyalgia is definitely related to too little thyroid hormone regulation! For those patients, what we call fibromyalgia is largely a set of symptoms that develops from too little thyroid hormone regulation. The two essential symptoms are chronic widespread pain and abnormal tenderness. However, the so-called associated fibromyalgia symptoms[1,2] are each classic hypothyroid symptoms.
Some patients inadequate thyroid hormone regulation occurs because of they have thyroid hormone deficiencies; for others, it occurs because of they have partial cellular resistance to thyroid hormone. In either case, the predominant symptoms can be widespread pain and tenderness. However, many fibromyalgia patients symptoms are worsened by lifestyle factors such as nutritional deficiencies and a pro-inflammatory diet, and various prescription drugs.
The more sophisticated, discerning tests you ask about are for the most part not laboratory tests, although for some patients, various lab tests can be helpful. But the conventional laboratory thyroid function tests (TSH, free T3, and free T4) are largely useless unless one or more of the levels is way out of range.
The important points are these: In-range TSH, free T3, and free T4 levels simply cannot logically rule out that a patient needs thyroid hormone therapy. And when a patient is undergoing thyroid hormone therapy, these test levels are not accurate gauges of the effectiveness of the therapy.
You said your thyroid lab tests were within range. Because of that, were I you, I wouldnt waste time undergoing more of the conventional tests. Instead, I would look for a clinician wholl listen to me, look at me, physically examine me, and do physiological (such as your Achilles reflex speed and the voltage of your ECG/EKG) and limited, meaningful lab tests.
Youve apparently tried to get an accurate diagnosis from physicians who lack skills at whats called pathognomy (pa thog no m). This term means the study and knowledge of the symptoms and all other characteristics of a disease. The term comes from the Greek for skilled in judging disease.
When you find a competent physician, he or she will practice pathognomy. Years ago, I invented the term extremist medical technocrat during an interview with Mary Shomon. What I meant by this term is that most conventional physicians dont practice pathognomy; instead, they practice a extreme medical technocracy. That is, they focus solely on lab test results, stair into their computers screens rather than you without giving you so much as a glance or permitting you to express yourself. In my view, for a physician to fail to embrace and practice pathognomy is to forsake his or her patients, such as you.
Laboratory thyroid function tests tell us nothing whatever about whether a persons tissue metabolism is sufficient regulated for the person to be healthy. They tell us nothing whatever about a patient's thyroidhormone-related general metabolic status. Thyroid patient advocates at Thyroid UK are a caring resource for people such as you in the UK. I encourage you to contact them. Their organizations contact information is at their website: thyroiduk.org.uk/tuk/index....
You can learn a great deal about the relation of fibromyalgia to thyroid hormone by reading some of the hundreds of webpages at drlowe.com. But I especially encourage you to read a review paper Jackie Yellin and I wrote a couple of years ago for Thyroid Science.[3] It the paper, we summarized the evidence that inadequate thyroid hormone regulation is the main underlying factor of most patients' fibromyalgia. Its likely that seeing the evidence will turn your suspicion that fibromyalgia and thyroid hormone are linked into an steadfast belief.
I hope this reply is helpful to you, and I wish you the best for soon recovering your health.
References
1. Wolfe, F., Smythe, H.A., Yunus, M.B. et al.: The American College of Rheumatology 1990 criteria for the classification of fibromyalgia: report of
the article you have submitted is very interesting and certainly struck a chord when he describes a physician staring at a computer screen and never looking at or listening to the patient who is for ever trying to be heard and helped. every single doctor i have ever met has been useless, that includes the ones i see for severe Scalp psoriasis.
i cannot understand why we are not treated like thyrois patientsin America who seem to
I am very sorry that you also have severe Scalp psoriasis which must be awful to deal with. I've had alopecia areata every summer for the last 7 years or so and go completely bald, it then begins slowly to come back but much thinner. However, your case is much worse than mine. I have also read if we've got one autoimmune condition, we are apt to develop others.
thank you. Alopecia areata must be very hard to deal with as well.
the consultant is horrible and ignorant. it is in my ears and drives me nuts
it is also on the outside of my private bits and i have to run to the loo to scratch myself raw. if i was hanging over Niagara falls with one hand, i would have to let go as the itch is so bad its the weight gain with this thyroid that gets a lot of people down. especially when we all hardly eat anything. people just dont believe you when you day its my thyroid
thank you again for responding to my post . i hope you start to feel better soon
i am posting my blood results on here any time later today.
i bought them into work to do it but thought it would be best if i took a photo of them then done it but my phone is full as its an iphone with low memory.
i took them home to do itoverthe weekend as the Doctor has put them on in a way that shows all my personal details every 4 lines or so. as soon as i get a chance Friday (which is my day off) i will post them and am lookinf forward to your views on the results
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Muscle and joint pain which gets really bad at night? Related to hypothyroidism?
Joint pain unbearable on levo, doctors dismiss my complaints as if it's unheard of...
I keep smelling burning paper.
Got to get off Levo, the body and muscle pain is too much.
the more I reduce my armour the higher the results seem to get, confused.
