My TSH has been increasing for several years now, and my most recent results are:-
TSH - 7.51 (0.34-5.60mu/l)
Serum Free T4 Level - 9.5 (7.9-20pmol/l)
Serum Ferritin - 28 (11 - 307ug/l)
Serum Vitamin B12 - 266 (120 - 625ng/l)
Serum Folate - 6.6 ug/l (>3)
The doctor also asked them to test the antibodies after these results came in, and confirmed that I have raised antibodies. However, The GP said that I would have to wait three months and have another blood test with similar results, because to treat me now would be going against NICE guidelines. It is now nearly three months since this last blood test, so I will be going in for another test. However, I had an appointment a few days ago to discuss the results of a fecal calprotectin test and celiac test, and a diagnosis of IBS. I mentioned the thyroid issue again, and this time the GP has confirmed that even if I have similar results in this upcoming test, which is likely as judging by symptoms my thyroid hasn't magically healed itself, he will NOT consider treatment, and said that he wouldn't be 'browbeaten' into prescribing something he doesn't think is appropriate.
I did mention that in this case I would be changing GP surgery, which he seemed very keen on. I'm clearly considered a problem patient.
My issue is, there is only one other GP surgery I am in the catchment area for, and from word of mouth this surgery sounds pretty crap. If I move there and still can't access treatment, I am looking at having to self treat.
I've looked in to NDT, however I am unclear about where I can get this from and how expensive it will be. Is it a case of having to find an endocrinologist who will prescribe it and paying for private appointments? Could anyone who self treats give me a ball park figure of how much they spend per month on medication / blood tests etc? I am still holding out a bit of hope for the new GP, as money is an issue and I really don't know if I can afford self treatment.
I guess my other option will be to leave it untreated, and wait until I am unwell enough to qualify for NHS treatment, but I am worried about this as doing some reading up it seems untreated hypothyroid massively increases risks of heart problems and high cholesterol.
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Sleepybunny21
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I'm no expert in NICE guidelines - but I suspect your doctor isn't, either! - but it seems to me that what they actually say is that and over-range TSH plus high antibodies qualifies you for treatment. I'm sure someone else will come along and either confirm that, or tell you what they do say. A TSH of over 7 does mean that you're very hypo, and it seems to me criminal that they want you to wait until it gets to ten! But, all doctors seem to be sadists.
On the plus side, with Hashi's, it shouldn't take too long for the TSH to go up to that level. It's just a matter of catching it at its highest. Do you always have your blood tests early morning and fasting? The TSH is highest at around mid-night. You can't have your blood draw then, obviously, but before 9am would be good. Later than that and it's beginning to get very low until it hits its lowest point around midday.
untreated hypothyroid massively increases risks of heart problems and high cholesterol.
Yes, but it is only a risk, not a certainty. Cholesterol levels go up when T3 - the active thyroid hormone - is low. But, that's really nothing to worry about. It won't do you any harm. It's a symptom, not a disease.
this time the GP has confirmed that even if I have similar results in this upcoming test, which is likely as judging by symptoms my thyroid hasn't magically healed itself, he will NOT consider treatment, and said that he wouldn't be 'browbeaten' into prescribing something he doesn't think is appropriate.
Then he is wrong. You have subclinical hypothyroidism - over range TSH (but less than 10) with normal FT4 - if your results come back like this a second time:
If the TSH level is above the normal reference range, the free thyroxine (FT4) level should be measured in the same sample.
.....
Suspect a diagnosis of subclinical hypothyroidism if TSH levels are above the normal reference range and FT4 is within the normal reference range.
In non-pregnant people, repeat TFTs 3–6 months after the initial result to exclude other causes of a transiently raised TSH and to confirm the diagnosis.
How should I manage a person with subclinical hypothyroidism (non-pregnant)?
Consider offering a 6-month trial of LT4 monotherapy in adults less than 65 years of age if:
The TSH level is above the reference range but lower than 10 mU/L and FT4 is within the reference range on 2 separate occasions 3 months apart, and
There are symptoms of hypothyroidism.
If symptoms do not improve after starting LT4 therapy, measure the TSH level and if it remains raised, adjust the dose of LT4. Once the TSH level is stable (2 similar measurements within the reference range 3 months apart), check TSH annually.
Also, this is worth discussing with the GP:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors) in answer to Question 2:
Question 2 asks:
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 2 or 3 months in case the abnormality represents a resolving thyroiditis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive - indicative of underlying autoimmune thyroid 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 become 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 restored serum TSH to the lower part of it's reference range. Levothyroxine in a dose of 75-100mcg daily will usually be enough.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 2 to show your doctor.
Don't consider self medicating at the moment. Go down this route:
If GP still wont budge I would discuss with the Practice Manager and complain that the GP is not following established advice and NICE Clinical Knowledge Summary.
As a very last resort you can always say something along the of you clearly have autoimmune thyroid disease (raised antibodies confirmed), subclinical hypothyroidism, symptoms of hypothyroidism, and all these confirm you should start treatment according to NICE, but if the GP wont prescribe then you will have no alternative but to source Levothyroxine yourself from the internet and the risks that involves, and self medicate.
Can I just add I think your ferritin is much too low to live with ;
No thyroid hormone works well if your core strength vitamins and minerals, ferritin, folate, B12 and vitamin D aren't maintained at optimal levels and I seriously think you should start building up here in preparation for a diagnosis and prescription medication for hypothyroidism.
I know now, through trail and some error, that I need my ferritin up at around 100, my folate at around 20. my B12 active at around 75 ++ ( serum B12 500++ ) and my vitamin D at around 100 :
I self supplement these as I fall into the NHS ranges but not at a high enough level to optimise my thyroid hormone replacement.
Just a comment - if excellent advice from greygoose and SeasideSusie still doesn't get you anywhere, here's info about GP catchment areas.
Catchment areas change from time to time. I googled for 'gp catchment area' and found that since 2015, all GP practices in England have been free to register new patients who live outside their practice boundary area.
Also if you go to this NHS page you can find surgeries within reach of you
I put in my postcode and it came up with well over 30 surgeries at increasing distances from me. So you might not be restricted to your surgery and one other.
Yes two tests are required minimum 6 weeks apart after first “abnormal “ test rest
Abnormal results are either TSH over 5 and/or Ft4 below range
If you have two thyroid tests where TSH is over 5 and symptoms, then you should be prescribed levothyroxine ……especially with high thyroid antibodies as well
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B is an option that contain folate, but is large capsule. You can tip powder out if can’t swallow capsule
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
GP should be doing full iron panel test for anaemia
Have they done so?
Are you vegetarian or vegan?
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
I am vegetarian and have very heavy periods, which I imagine exacerbates the low ferritin.
I shall ask for a full iron panel with the next blood test. Thank-you for all the links! I'm taking 'gentle' iron tablets at the moment but have a suspicion that I might not be absorbing effectively due to bowel issues.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
I had an appointment a few days ago to discuss the results of a fecal calprotectin test and celiac test, and a diagnosis of IBS
Presumably coeliac test was negative
But a negative coeliac test does NOT rule out gluten intolerance
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
As result of coeliac test is negative you can now consider trialing strictly gluten free diet for 3-6 months. Likely to see benefits. Can take many months for brain fog to lift.
If no obvious improvement, reintroduce gluten 6 months later see if symptoms get worse.
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.
Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.
So while you wait for next thyroid test in 6-8 weeks
Work on improving low vitamin levels
Get vitamin D tested - come back with new post once you get results
Trial strictly gluten free diet
ALWAYS get all thyroid tests done as early as possible in morning before eating or drinking anything other than water
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