So I recently was given a trial of T4 50mg. The gp said if my results go down and my symptoms don't improve she will stop it as it is too much of a lifelong commitment. I have hashis.
I am wondering what if my results go down and symptoms don't improve or the most concerning ones don't improve....what if the problem is that the dose isn't high enough. Rather than the view the gp appears to take which is the thyroid isn't the problem cos the dosage I gave you doesn't work.
Any suggestions about what approach or how u get a gp to increase the dosage to help with symptoms?
Just thinking ahead of the game what avenues are open to me to change their opinion in case her view is wrong?
I'm two week s into taking T4 and feeling no different. I know it takes longer to feel impact of it and varies for people so not overly concerned as yet.
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I cannot make head nor tail of your GPs response. If you have hashimoto's you have a condition for life, unless your GP knows of some other condition? Of she is aware of a 'cure'.
If you have hashimoto's it is the commonest form of hypothyroidism and it is a lifelong condition. This is due to you having antibodies in your blood. An extract of your GP's statement:-
"The gp said if my results go down and my symptoms don't improve she will stop it as it is too much of a lifelong commitment. I have hashis."
Having hashimoto's is a lifelong autoimmune disease and we have to have, slowly, optimum thyroid hormones to relieve our clinical symptoms.
I think your GP needs her thyroid hormones checked as she doesn't make sense at all. If any one on this forum has hashimoto's, or hypothyroidism, these are life-long conditions. The aim of replacement thyroid hormones is that we feel well with relief of symptoms and TSH of 1 or lower and both Frees (FT4 and FT3) in the upper part of the ranges.
I am unaware of any cure for this condition, except it being kept 'in control through replacement thyroid hormones'. Going gluten-free can help reduce the antibodies that wax and wane.
So....how would I deal with the situation which could happen that by the end of the trial some of my results might be deemed more acceptable to her but my symptoms are just the same. Or worse or some improved and others not.
How would you suggest that I get her to go for an increase in the dosage. Because it seems to be not even on her mind to go that direction.
She only agreed to the trial because I threatened to self medicate. Said I had enough of 5 years waiting for improvements and NHS guidelines to catch up with me.
What are your current test results, if you post them, along with their reference ranges, we can see whether 50mcg Levo is likely to make much difference.
Tsh 5.45 ft3 4.8 (top range 6.8) ft4 13.8 (12 bottom of range) antibodies 100. It's because I'm subclinical according to nhs that she's reluctant to keep me on meds
Presumably TPO antibodies are 100 and that is over range? Then this confirms autoimmune thyroid disease, known to patients as Hashimoto's, which is where the immune system attacks and gradually destroys the thyroid.
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 pointing out that as yur antibodies are raised, indicating autoimmune thyroid disease, then it is suggested that Levo is started now. If things are left you will inevitably become more and more unwell as your thyroid gets progressively destroyed, so why would a GP be willing to let you suffer. If your GP refuses then I would state that you will self medicate, and is your GP happy for you to take a chance on obtaining Levothyroxine from the internet.
That's what I have done. She started me on a trial because I said I was going to self medicate. The dose is 50. It's interesting to note this states starting dose should be 75.
Two weeks on it so far. I feel no improvements yet.
Do NHS GPS have to follow this guidance if I show her it. Will it ultimately make her change the dosage should I need it changed?
Two weeks on it so far. I feel no improvements yet.
I'm not surprised, it's too early yet. It can take 6 weeks to feel the full effects of starting Levo or a dose change.
Do NHS GPS have to follow this guidance if I show her it. Will it ultimately make her change the dosage should I need it changed?
That is not guidance like the NICE guidelines, it is Dr Toft's personal opinion, he being a leading endocrinologist and past president of the BTF. Whether she accepts what he says I can't say but it's all I have to give you to fight your corner. I think maybe your GP doesn't have a clue what autoimmune thyroid disease and what it does.
Yes, wasn't expecting big changes yet. Not to say I wasn't hoping for it though.
So it's not something she would have to follow so could be disregarded but I'll reference it if I need to should she refer to articles and research and trials etc like she did when she was going initially down the wait and see approach with me.
I was started on Levo with TSH of 5. On 50mcg I felt nothing except for slight fatigue. On 75mcg I started to feel something but not much and still had slight fatigue. Upon taking 88mcg the slight fatigue subsided.
I've been on Levo for 11 years so there's a lot of history there. I had subtle symptoms before developing an adenoma on my thyroid then losing half of it so a few years later I was put on it and titrated to 88mcg. Because of this I didn't have to fight with my endo over it but afterwards saw a series of GPs and endos and they left me on the same dose. My last GP left me quite unwell on that dose and it wasn't until I did some reading and looking at my labs over 4 years that I realized all my symptoms were due to not having enough thyroid hormone. Now I'm with a functional nurse practitioner. I've had to go through several GPs and endos to find one that's a good fit.
I ended up in that situation because GPs didn't listen to my symptoms in the first place and didn't increase my meds. Hopefully you won't let that happen because low thyroid hormone can cause some serious issues but it sounds like you're asking the right questions and getting informed. Best wishes.
To give you the best chance of staying on the meds you need, don't forget to have an early morning fasting blood test (before 9am) next time - when TSH is highest - and a 24 hour gap from taking your last dose of levo (take the next dose straight afterwards) - so you don't have a just-taken-your-meds spike.
You have Hashimoto’s ..your thyroid is being destroyed
Of course you need levothyroxine….50mcg is only a standard starter dose
Bloods should be retested 6-8 weeks after each dose increase
Likely to need several further increases over coming months
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Vitamins are all good. Inject b12. Take folate. Take but.d. k and magnesium. Not got any food allergies or foods that I don't feel well on. No coeliac blood test. Why would I need that. I need . I'm on accord. I need to fig that dose out then with weight of 8 stone 8 I think
I would just ask her how ill you have to be before she starts treating you? What benefit does she gain in making you worse? The antibodies confirm your thyroid is in trouble and can only get worse without treatment. In the USA their treatment point is a TSH above 5.
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