Hello and once more, many thanks for being able to offer support and clarity.
I have posted previously about being diagnosed Hypo after decades of symptoms, and being maintained on 100mcg for six years, albeit without any proper support and no insight into any of the context which this site has subsequently offered.
Last summer, my GP retired and a review by a new GP resulted in a reduction from 100mcg Levo, down to 25 mcg in three stages, in eight weeks. This was during very high temperatures, which exacerbated somevery alarming symptoms.
Context : Having always had a low basal temp (35.5 - 35.8), I had heavy sweats ascribed to menopause for many years; mobility issues, digestive problems, joint problems, tinnitus, balance problems, eye problems, exhaustion, erratic health, sleep issues, depression and ‘gloom’. I have never been tested for antibodies, . (My aunt was diagnosed in her late 80’s as hypo and she had lost a third of her weight, would sleep spontaneously and suddenly, and was then diagnosed with myeloma).
All through these years I worked long hours and at times felt ‘driven’. Then I would crash and burn. There were definite ‘phases’ resembling a fairground ride!
Have for six months been suffering with periodic feelings of erratic and fluttery heartbeat, a sense of compression, and been unable to lay flat at night as heart feels ‘flooded’ and ‘spongy’. Went to A and E in October, by which time GP had been persuaded to increase my Levo back to 75mcg over two stages. There was no follow up, but have just been given a cardio appointment for next week, after going to GP.
Any advice?
Thanks in advance...
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BlueMoon65
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Change your doctor as he/she seems unknowledgeable and must think that your TSH has to rise instead of it being around 1 or lower. Most, I believe, think that 'somewhere in range' - even up to 5 is fine.
How ignorant are many of our GPs in treating those who have hypothyroidism!!! Reading the posts on this forum you just wonder how they are trained. Give us the old-fashioned training when doctors could tell a patient was hypothyroid as they walked into the surgery and then regarded the clinical symptoms as needing to be eliminated. We were given 'natural thyroid hormones' without blood tests, on a trial basis and if patient improved they were diagnosed as hypo and dose was increased slowly until all symptoms were relieved.
That seems a much more humane way of treating patients.
Doctors seem unaware what the purpose is of levothyroxine. It, being the inactive hormone that has to convert to the Active hormone T3. T3 is needed in our millions of T3 receptor cells and the heart and brain contain the most. I think, and am not medically qualified, that may be the reason our heart plays up
Thank you so very much...like so many others, I was despairing; after decades of being treated with scepticism by doctors, and then feeling that thyroid diagnosis would change things, it is horribly demoralising to receive little or no information from GPS. Nobody had even told me when and how to take Levo. ‘In morning’ is as far as it got! My sister in law, who is 80,was diagnosed in 1950’s. She was on NDT for years. By the time she was in her fifties, she looked as though she was Hyper, not Hypo, with protruding eyes, anxiety, yet weight problems. I was the one who told her not to take her Levo with her morning tea and breakfast, so conjecture that her absorption and levels were all over the place. To me, this is nothing short of a tragedy. So many people have had their health put in jeopardy.
The fact is that I doubt any doctors are aware that levo should be taken on an empty stomach or that food can interfere with the uptake. All their concentration goes upon the level of TSH and maybe T4. The never test the FT4 and FT3.They do their utmost to keep the TSH somewhere in the range, when it should be 1 or lower. Seem not to understand that TSH has a diurnal pattern.
i.e. What is a diurnal pattern?
1. Relating to or occurring in a 24-hour period; daily.
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
They can no longer charge for printing out, rules changed after May 25th 2018
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised and as we get older
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Hello, yes, I suspected this, and yet my new, new GP ( the one who reduced my dose so rapidly was salaried and has now left...) says she cannot think so, and has only tested T4 and TSH. She won’t refer to an Endo, but did speed up my cardiology appointment, which, thank goodness, took place today. The cardio was shocked that such dosage changes were made by a GP without recourse to an Endo, and so rapidly. Exemplifies everything you say here. Apparently my cholesterol is 7 (was7.6,), and I assume this is entirely down to sluggish thyroid function, as I eat very carefully, exercise moderately and regularly, and am size 12/14.
High cholesterol is linked to hypo, so should come down when properly medicated. My cardio was lovely and knowledgeable and even drew diagrams of how everything worked! What a difference.
Thanks so much...this site is so life saving! Have seen a cardio this morning, and she was a refreshing change in that she expressed astonishment that a GP would take it upon herself to radically reduce meds without consulting an Endo (although so many people on here have expressed frustration with them too)! Have had one blood test now under the routine described on here, and feel really stupid that I had always had it two hours after meds. Heigh ho! See my general post re cholesterol...
It is not us (hypo) patients who are ignorant of how to get the best results. I doubt the Endocrinologists and doctors know that an early a.m. test will be different to a late p.m. one.
Context : Having always had a low basal temp (35.5 - 35.8), I had heavy sweats ascribed to menopause for many years; mobility issues, digestive problems, joint problems, tinnitus, balance problems, eye problems, exhaustion, erratic health, sleep issues, depression and ‘gloom’.
[...]
Have for six months been suffering with periodic feelings of erratic and fluttery heartbeat,
To add to the possibilities...
1) A common effect of being hypo is having low levels of iron and/or ferritin, vitamin B12, folate, and vitamin D3. I'm not sure if my experience is common but my gloom and depression lifted a lot when I got my iron and ferritin levels as close to optimal as I could manage.
2) Having long term thyroid problems puts a lot of strain on the adrenal glands. The body tries to compensate for low thyroid hormones by bumping up the production of the stress hormones, cortisol and adrenaline. Having excessive levels of stress hormones is a common problem in people with thyroid disease. Eventually the adrenal glands can't keep up production any longer and the stress hormones start to drop. Once that happens the body has no further fall-back options and everything goes haywire. Both high and low levels of cortisol can be measured (I don't know any way of measuring adrenaline) and treated to improve health. The most informative test for cortisol is a saliva test carried out four times a day.
It can be a shock to the system to find out how unhelpful doctors are in doing testing that is worth doing. Paying privately, without the input from a doctor or an insurance company, is perfectly possible in the UK and can also be done in some other countries too - it depends where you live.
Hello... yes, I have improved since I began taking high dose Vitamin D3 (5000 I.u. in winter, 3000 I.u. in summer). I also take a sublingual B12/B6/folate. The horrible feelings, which I assume were complex in origin, seemed also to be due to low blood pressure. I suspected that, like my mother, I was suffering from heart failure - a cardiologist had said, 2019, that cardiac pain which had been thoroughly investigated, might have been due to an episode of inflammation. However, having declined statins and beta- blockers ( I still puzzle as to whether the latter would have finished me off!), no remedies were offered. So for me, the advice about vitamins, plus going 'gluten free', which this excellent site suggested, has helped enormously. I know I must have autoimmune disease, as I've now got pancreatitis ( also investigated). But we are all different, and this is where, IMHO, our doctors let us down. You may have different reasons for your symptoms. I have never used T3, so don't feel qualified to comment on whether it could be related to your symptoms. I wish you well - it's really unpleasant and quite frightening. Take care and try to find a doctor who will understand thyroid issues thoroughly., 😢🙏
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