Don't think I've ever felt so disillusioned and frustrated by our N.H.S.
Have had many symptoms of underactive thyroid for many years. Also had double vision and had all tests for Occular Myasthenia. However, the tests all came to nothing, am still on a 1mg dose of prednisone day and 60mg of mestinon. During one of many visits to see neurologist,the registrar recommended an in depth thyroid panel be done. Was overruled by neurologist and not done.
I decided that although an unpaid carer for husband I needed to try to have these done privately myself. My T.S.H was 2.68, T3 3.68 and T4 12.6.
Antibodies we're 20.9 and peroxidase 59.1.
2 years down the line see attached pic
My g.p and Endocrinologist are refusing to offer me a trial of meds although other professionals have said they should. I asked for a second opinion from Endocrinologist, expected a referral to see someone but today received a letter from said person saying he agrees with 1st Endocrinologist, who I've also never met ,just saw the registrar 18months ago.
Am on the verge of going private reluctantly and wonder if anyone else has had experience of a Dr. Frey based in Suffolk?
Sorry for the long rant, can't keep going on like this it's driving me crazy. Hope someone can help. I'm in Cornwall uk.
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Cheese14
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An over range TSH with positive antibodies should give you a diagnosis of autoimmune thyroid disease (known to patients as Hashimoto's) and prescription for Levothyroxine.
Your Medichecks results show TSH just scraped over range and if you can get an NHS test with over range TSH and raised antibodies then an enlightened GP should prescribe. YourGP may not accept your private results but you could use the following information to push for further NHS testing and prescription:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
Question 2:
I often see patients who have an elevated TSH but normal T4. How should I be managing them?
Answer:
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat thyroid function tests in two or three months in case the abormality represents a resolving thyroiditisis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive - indicative of underlying autoimmune disease - the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to be come worse and try to nip things in the bud rather than risk loss to follow up.
Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of it's reference range. Levothyroxine in a dose of 75-100mcg daily will usually be enough.
If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless serum TSH is consistently greater than 10mU/l. A serum TSh of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient's normal TSH concentration.
If there is anyone in your family who already has a diagnosis of Hashimoto's then this should be taken into account by the GP.
Ask your GP for coeliac blood test, plus vitamin D, folate, ferritin and B12 testing
High thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s 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, sometimes 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
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
I wonder if it is possible to see a different GP in your area? I'm guessing not, or you would likely have tried already... Just trying a different GP at the local surgery changed things for me. It must be so disheartening to feel that the medical professionals are ganging up on you, particularly when you need your energy for caring.
as far as NHS are concerned TSH (thyroid stimulating hormone) is the important one.
Do you know that TSH is naturally higher in the middle of the night and falls to its lowest around 2pm ?
This is why when trying to get a diagnosis of hypothyroidism it is recommended to get the blood test drawn as early as possible in the morning.
eating breakfast can also possibly lower TSH a bit, so if trying again at GP, do /say whatever it takes / wait as long as it takes to get a blood test appointment before 9am, and do it without eating or drinking anything other than water for breakfast.
In some people the difference in TSH through the day can be as much as 50%.
Take that to your GP (or preferably a different GP). It may help.
GPs are different - at my previous surgery (before I moved house) I knew which ones were helpful. When my doctor retired his replacement was definitely unhelpful. You definitely need treatment.
Wow Thanks Everyone for your replies! My T.S.H was taken at 730 am before eating and drinking anything, last nhs one was done after lunch. I am at present gluten free or mainly gluten free since about November, it has lowered my antibodies somewhat. Not sure if hashimoto's in my family as both parents passed years ago although dad did have high cholesterol and atherosclerosis so...One of gps from my local practice has online sent me an appointment for next Wednesday (face to face)😲 Have asked to speak to different gps and sometimes just depends who's free and often a locum who can't be seen again. I last spoke to this gp in November, he point blank refused any meds then over the telephone, don't hold out much hope but... I will ask about the vitamins etc and take along the tick list of symptoms,ask about the coeliac test too. 🤞he will listen,also asking for a referral to Derriford to see an Endocrinologist although Don't hold out much hope on that either. Thanks again and will let you all know how it goes xx
Update my so called face to face appointment is not, its a telephone call. No time ,named g.p not one I requested and also one I had issues with back in November. Any one know of any helpful private Endocrinologists in Cornwall or Devon Please??
Will request those tomorrow and if necessary the thyroid ones again as they won't accept the others. Remember my iron was low before and no reason found for it as not investigated. Given ferrous sulphate and after 3 months I had to chase for blood test to see if still needed to take them. Just had it with nhs, I'm a carer for hubby and struggling to care for myself.
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