I've been lurking in these forums gathering as much info about hypo as I can as my GP has been of little help. I was diagnosed in September last year and put on 50mg of Levo, but my sympyoms have not improved and some are getting worse (have given up work and driving now). GP has refused to increase dosage even though other deficiencies ehich could cause my symptoms have been ruled out). Can someone advise what action I should take as Im fed up being told 'normal' at every appt when Im far from normally functioning.
19th December 2017
TSH level 3.64 U/mL [0.38 - 5.33]
20th September 2018
TSH level 5.3 miu/L [0.35 - 4.94]
Free T4 level 10.1 pmol/L [9.0 - 19.0]
29th November 2018
TSH level 2.5 miu/L [0.35 - 4.94]
27th March 2019
TSH level 1.7 miu/L [0.35 - 4.94]
25th April 2019
TSH level 4.4 miu/L [0.35 - 4.94]
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ILR2019
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Test conditions have always been consistent (and in line with your points above). Never had thyroid antibodies tested, Vit D is within range and B12 has dropped from 281 in September 2018 to 230 (no drastic diet changes although due to fatigue and chronic aching my 20k step count has halved) in April 2019. The reason for the closeness of the March/April tests was simply seeing a different doctor. Im so confused by these results. I questioned why Ive only had 1 Free T4 test and was told TSH was all that was needed.
"GP has refused to increase dosage even though other deficiencies ehich could cause my symptoms have been ruled out)."
"B12 has dropped from 281 in September 2018 to 230"
B12 deficiency can't be ruled out if that is Serum B12 test result. Many people with a result in the 300s have been started on B12 injections due to symptoms of deficiency. It's symptoms that doctors are supposed to go by not numbers.
According to the book "Could it be B12" by Sally Pacholok, serum B12 level should be above 550pg/ml. Check for signs of B12 deficiency here:
As your serum B12 is so low, I'd want to test Active B12 as well because if that comes back less than 70 that suggests testing for B12 deficiency. The NHS doesn't normally test Active B12 but you can do a home fingerprick test from Medichecks
As for Vit D, there are categories, Deficient, Insufficient, Sufficient, etc. Each category has it's own range. The Vit D Council recommends a level of 125nmol and the Vit D Society recommends 100-150nmol. What is your level? Muscle and joint aches and pains can be due to low Vit D.
What about Ferritin? Low Ferritin can cause fatigue.
As your tests have always been done under the correct conditions each time, the fact that your TSH varies so much, I would be thinking that Hashimoto's might be a possibility so testing both thyroid peroxidase (TPO) and thyrogbulin (TG) antibodies would be a good idea. You may be able to get TPO antibodies tested by GP, doubtful if you'll get TG antibodies tested. And of course, you probably know that testing FT4 and FT3 is also important because TSH alone doesn't tell us anything about the actual level of thyroid hormones.
See GP and insist on testing of both TPO and TG thyroid antibodies as its most likely cause of hypothyroidism is due to autoimmune thyroid disease (Hashimoto's)
B12 is ridiculously low. You need folate testing as well and tests for Pernicious Anaemia
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
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
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
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Thank you so much for your help. I checked back through my test history and between Jan 17 and today there was only 1 test for Ferratin although no idea if it is normal (ferritin level 61 ug/l) and no tests for vitamins, calcium etc).
Can I just ask, how often should the doctors be testing full thyroid panel? After my diagnoses I was initially told every 3-6 months depending how I felt (rediculous really considering my monthly visists citing the same, worsening and/or increasing symptoms)
Typically ferritin range is 30-150 ....but every lab is different. Generally we say ferritin at least half way in range (around 70 )
Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption
Ask GP for testing for Pernicious Anaemia before starting on any B vitamin supplements. You may need B12 injections, but more likely need to self supplement a daily good quality vitamin B complex (plus sublingual B12 if you have low B12 symptoms too )
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
Suggest you get FULL Thyroid and vitamin testing, privately if necessary, 6-8 weeks later
Vast majority of patients forced to test privately....NHS is in the dark ages (and going backwards looking at proposed new NICE guidelines)
TSH is God and nothing else needs testing .....because it's the cheap option.
Low vitamin levels are extremely common as direct result of being hypothyroid and low vitamin levels tend to lower TSH
About 80-90% of primary hypothyroidism is due to autoimmune thyroid disease. (Hashimoto's ) and because levels swing around a lot TSH is very unreliable and often low
But don't expect an average GP (or diabetes specialist endocrinologist) to know any of this
Hypothyroidism is as much about the gut, poor nutrient absorption and low vitamin levels as result, as it is the thyroid
Most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine
Guidelines suggest 1.6mcg per kilo of weight. If 9st 8lbs that'd around 100mcg Levothyroxine
Well, even just looking at TSH, this reading has gone up between March and April indicating that you need an increase of thyroxine. Can you change your GP again?
I can, but I live in a village surrounded by other villages so I think the GP's job share turns at the practices. Since I moved in August I have never seen the same GP twice so the problem is not arrising from one specific doctor, but several. I have a blood test today (which Im hoping is for vitamin levels. I will wait and see the results, have yet another GP consultation (i'll probably need to wait another 3 weeks for appt) and if no joy I have decided to put in a complaint and I will change GP to one in our closest town about 6 miles away
Yep they have all said there is no need for an inceease (until the last week or so where I have been reading on these forums and researching I didn't know any better so never aueried results). In fact the last doctor I saw actually suggested I do a urine dip as it was probably a urine infection and if that came back clear along with today's bloods they would look into phychological reasons for the symptoms.
Tbh, until about a month ago I didn't know what an endo was or that misdiagnoses, undermedicating and lack of knowledge regarding hypo was so widespread. Im going to ask for a referral and see what they say. Im floored there is more sympathy and knowledge in these foruns than at countrywide clinics.
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