I’ve not posted for a while - thought my thyroid issues were at least settled - and was dealing with other health stuff I didn’t think was related. But tbh nod I don’t know, but I feel the worst I have in ages, GP ran a load of bloods, so I’ll post results in the hope that one of you knowledgeable lot can shine some light
They ran tests because my WBC count has been high since Feb 2029 when thyroid issues started. But for 16 months now basophils & platelets still high. Waiting to see haematologist- not til Sept. GP also referred me to rheumatologist / I’ve got really bad joint pains, esp hands, elbows & knees. My temp keeps spiking to 38.1 of over every evening (this afternoon was 38.5).
Ive had 6 courses of antibiotics for sinusitis & pneumonia, that’s all settled, so the WBC isn’t linked to infection.
I’m struggling to stay awake, I’ve put on sooooooo much weight, if I do anything apart from lie in bed, I feel like I’ve been hit by a truck / coming down with flu or something.
GPs weren’t happy with my TSH being suppressed (it had been at 0.02 - range us 0.3-4.2), when I was on 100mcgs thyroxine, so had me reduce to 50mcgs Sat & Sun. At 100mcgs my FT4 was 17.7 (12-22).
But bloods done this week are as follows:
TSH - 0.26 (0.3-4.2)
FT4 - 11.7 (12-22)
[no FT3 test done… you know how that is!]
So BOTH are low. I know in previous posts it was suggested it might be indicative of primary hypothyroidism, but tbh once gPs got FT4 up they weren’t interested.
D3 is 50 - range 51-250
Full WBC is 11.37 [3.5-11]
Platelets 467 [140-400]
Basophils 0.13 [0-0.1]
22 April
Ferritin 34 [30-200] - you know the GP said that’s fine!!
CRP - 6 [0-5]
Serum Gamma GT 47 [5-36] - indicator of liver damage
EGFR - shows stage 3 kidney disease
I have no idea what’s linked to what or what’s actually wrong, and hot phone appt with head GP of the practice Monday evening.
I’m going to ask for haematologist appt to be brought forward, and ask if he’ll refer me to endocrinologist.
Sorry it’s such a long post & I know lots of these blood results aren’t specifically thyroid related, but just to give you a picture of what’s going on.
Hope this makes sense!! Thank you!
Written by
KayS68
To view profiles and participate in discussions please or .
Email Thyroid UK for list of recommend thyroid specialist endocrinologists.
NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
How much do you weigh in kilo?
Guidelines on dose levothyroxine by weight is approx 1.6mcg levothyroxine per kilo
Sorry - on 100mcgs thyroxine 5 days a week & 50 for 2 days a week. I’m on Accord & that’s been the same since I started. Vit D I was taking Better You sublingual spray (I forget the dose) but I confess I ran out a few weeks ago.
When I was on 100mcgs every day, GPS weren’t happy with TSH being “suppressed” so they suggested that reduction, but between you & I, I didn’t reduce it until about 10 days ago as I honestly didn’t want my FT4 to go down. So I reduced it as soon as I knew they wanted bloods done, but that was only last weekend & test was Tuesday. I know I should have done what they said, but I didn’t feel great so I didn’t want to feel worse, if that makes sense.
I’m very overweight, so 109Kg (5’8) - oh & I’m a woman 😂
Diet - I’m not vegetarian or vegan - it was bad last year, but I’ve been eating better (tho obvs still too much!!) - had personal trainer help with nutrition (she is nutritionist too), just in terms of calorie deficit, eating more made from scratch food.
I just feel like there’s so much going on they’ll minimise what I try to say, again. But I feel so bloody awful. I can’t remember if I said about my temp spikes too - every day spikes of 38.1°C or higher. But when I first was hypothyroid it was low 36°s.
So test was pretty meaningless, it needs to be done 6-8 weeks after constant unchanging dose (so if on different dose on different days, sticking to that dose regime)
TSH - 0.26 (0.3-4.2)
FT4 - 11.7 (12-22)
It takes weeks for TSH to respond to any dose change
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
Suggest you work on improving low vitamin levels over next 6 weeks
Then retest thyroid and vitamin levels privately
Rather than taking 100mcg 5 days a week and 50mcg twice week…. you could try 100mcg 3 x week and 75mcg 4 days week. Dose on alternate days.
Get weekly pill dispenser as will need to cut 100mcg in half to give 50mcg and cut 50mcg in half to get 25mcg = 75mcg
Likely to need further increase in levothyroxine. But you must get accurate test after6-8 weeks on constant unchanging dose levothyroxine
Essential to get vitamin levels OPTIMAL as low vitamin levels tend to lower TSH
Vitamin D at least around 80nmol and around 100nmol maybe better
Guidelines on dose levothyroxine by weight is far higher than you are currently taking, at approx 1.6mcg levothyroxine per kilo of your weight. So you will highly likely need to increase dose slowly upwards in 25mcg steps over coming year. Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
109 x 1.6 = 175mcg levothyroxine per day as the possible dose you might eventually end up on
Yes Ft4 reacts immediately to how much levothyroxine you are taking ….hence the advice to take last dose 24 hours before test
TSH is often very slow to respond, at least 6-8 weeks.
When were folate and B12 last tested?
What vitamin supplements are you currently taking apart from vitamin D?
Recommend getting at least TSH, Ft4 and Ft3 tested at next test. Monitor My Health Is cheapest at £26.10 if use code from Thyroid U.K.
But ideally you need thyroid antibodies and vitamin levels tested too. Medichecks often cheapest, especially if purchase when on offer - usually Thursdays
I think she requested B12 this week, but folate - definitely not in the last 18 months. Taking B12, B3, B5, omega 3, magnesium & 5-HTP - all suggested for support for antidepressants. I asked about TG antibodies as they are ones which hadn’t been tested, but their lab don’t do them, so I have planned to do a private one for that & I thought maybe cortisol.
The GP I’m speaking to on Monday is so helpful & I know he’ll do whatever he can (he knows my full history & that my son has complex health problems… and my MH difficulties) - so I’m going to ask for as much help as he can give.
The GP who has been seeing me for the fever spikes, joint pain etc suspects RA, and I’m wondering if just a big autoimmune link.
Thank you again for being so helpful - I must sound stupid asking the same things! 🥺 x
Significant minority of Hashimoto’s patients only have high TG antibodies, obviously struggle to get diagnosed by NHS
20% of Hashimoto’s patients never have high thyroid antibodies at all. Ultrasound scan of thyroid can help get diagnosis. With autoimmune thyroid disease thyroid will look granular or holey. With Ord’s thyroiditis, thyroid will be small, shrunken and shrivelled
I’ve had TSH & TPO antibodies tested - both negative - but endocrine surgeon (who I saw for nodules) said he would order that test & never did… now I’m discharged.
I’ve had 2 ultrasounds done because it started with “acute thyroiditis” and thyrotoxicosis last Feb - they showed nodules & inflammation. But endocrine surgeon said nodules look benign, so no FNA.
Not had coeliac blood test, but I was trying gluten free (failed abysmally). I could ask GP about testing.
What I did notice was less bloating - when I had abdomen ultrasound I have excessive gas in colon - it’s been like that for a while. My liver is also enlarged - the ultrasound found that, as they were looking for gallstones. The excessive gas is what made me think of trying gluten free. If gp won’t do that test, I’ll just cut out gluten & see how things go.
Ok. I think I’ll just do this now anyway. I have ulcerative colitis )but it’s been in remission for a long time), so I know it’ll be good to give my gut a break.
Depression is strongly linked to being under medicated and especially low Ft3
Low GFR linked to low Ft3 too
Essential to get TSH, Ft4 and Ft3 tested together after being on constant unchanging dose levothyroxine for 6-8 weeks. Likely to then see you can increase dose levothyroxine up
Get weekly pill dispenser, makes it much easier to see/remember to take pills daily
When I was on 100mcgs they reduced it, because of the TSH being “suppressed” - despite me saying that the FT4 & FT3 were optimal. That’s why I didn’t want to do the reduction they suggested.
I always take my thyroxine first thing (7am) when I feed my dogs. Would switching to bedtime change anything?
Some people have improvements splitting dose - half waking and half at bedtime. But it’s obviously more faff and more to remember
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
That’s the thing - the GPs get agitated if they see the TSH low, but I did try to explain what I learnt from you here.
I have an Apple Watch - but tbh my HR is high - I have high BP & on meds which reduce it (they’re actually for migraines) but resting HR is always higher than it should be.
I’ll look into taking it at bedtime. I take lansoprazole, so I take that (& antidepressants, mood stabilisers, BP meds, mesalazine) all at around 6pm, to keep everything spaced apart, but I can easily move things so take the bulk in the morning & thyroxine at bedtime.
What’s your diet like, are you vegetarian or vegan
Request full iron panel test for anaemia or use Medichecks to test
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
Thank you so much! I didn’t want to supplement iron before I saw haematologist and tbh I want them to see me as I am - otherwise I think they just brush it all off.
I would suggest you find a good endo as your case looks a little more complicated and all auto immune. Your t4 is way too low for starters and should be 75% up through the range. Same with t3 and you need to get it tested.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
So fed up, don't know what to do.
So fed up being undiagnosed! What is going on with me?
Fed up, worried and just plain fed up!
