I was told by my GP last week that my bloods had come back and that I have hypothyroidism based on T4 level. However he failed to tell me my TSH level which today I found on my online test results page is 18. Can I ask if this is ok? Of course tests for T3 weren’t included which I understand is fairly normal for the NHS.
Any advice would be greatly appreciated, thank you.
A TSH of 18 means you’re very hypothyroid—the range is usually something like 0.5 to 4.5 (they vary a bit but not much).
Are you already on levothyroxine?
Yes, he put me on 50mg of Levothyroxine, but because he didn’t tell me the TSH just the T4 level, I thought I was a mild case, so I split the tablets in half so up until this morning I’d only been taking 25mg . I took the 50mg this morning, but it’s difficult as I’m already on other meds for fibro and getting the timing right Is proving difficult.
It’s odd that with that level of TSH I’ve lost weight rather than gained it but suffer horribly with hair loss and cold!
Most doctors don’t know that a minority of hypothyroid patients can lose weight. As my daughter was told over 20 years ago by her university GP , ‘don’t be stupid, you would be fat if you were hypothyroid ‘! She was totally astonished by the way he responded.
It doesn't work like that. Taking too low a dose can actually make you worse as the levo doesn't top up what your thyroid is able to make, it replaces it - if you take less than your thyroid was able to make, you'll be more ill. At least your doctor seems to know that it is the actual thyroid hormones that are important, not the TSH. I lost weight with hypo.
Hi, those are the TSH figures from a while back - despite endos upping them to 10 - can I please ask where you got the 0.5 to 4.5 TSH figures from? That was always my understanding. Thanks.
I’m not sure what you’re asking, LindaC—but if you google “TSH Laboratory Reference Range” you’ll find lots of examples of TSH reference ranges.
Really!? - Thanks. I never considered looking up TSH now, since it was moved up to 10.
A decade ago it was TSH above 4, with some of the much better doctors treating at over 3 or even lower.
I don’t think the range itself has moved—certainly not in the last 5 years—but many doctors won’t start treatment until the TSH level has gone over 10.
That’s a whole different (and deeply frustrating) issue. 😫
As you have Fibro I would suggest you ask for anti-body testingcto rule out Hashimotos - Anti-TPO & Tg. NHS rarely do both - Sigh !
Have you been tested for B12 - Folate - Ferritin - VitD ? So often low in range when Hypo. Also good levels are needed for good conversion of the T4/Levo you are taking into the active T3. It is low T3 that causes symptoms and can be involved in Fibro.
As you have access to your results it maybe worth looking back to view other thyroid test results. What was your FT4 result ?
Make sure you are re-tested in 6/8 weeks so your dose can be increased as 50 is a starting dose. Make sure your other meds are taken well away from the levo which is best taken on an empty stomach and then wait an hour before eating.
Welcome to the Forum !
Thank you for your very kind welcome Marz.
Yes, they did wtest for Ferritin which was 38 and within range. My B12 was 380, the Folate was 6.5 and my T4 was 10. When I spoke with my GP he only mentioned the T4, no mention of the TSH and T3 wasn’t tested. I will certainly ask for an anti body test along with requesting one for T3 ..... although I don’t think the NHS does them.
I have been taking Vit D for the past six months of my own volition.
I am due to have more tests in 6 weeks to see what impact the Levo has had and whether it needs adjusting.
I’m finding it difficult with other meds, as you say they have to be taken well apart from the Levo so I’m waiting about 4 hours before taking my other meds at the moment.
Thank you so much for your kind and thorough response.
Had cataract surgery today - back soon !
Oh bless you, I hope it all went well and that your vision improves dramatically. My father had his done and he said it was like a miracle! 🙏🏻
Thank you ! It all went well and now relaxing at home ...
Ferritin is good around 70+ and B12 over 500 to prevent cognitive decline. Folate us good in double figures is also good and needed as it works with B12 in an important way. VitD around 100+ to prevent many conditions including many cancers.
Sadly people wonder why their Levo is not working well and it is usually due to low vitamins and minerals. Are you supplementing ?
Happy to help ... 🌻
If you're on pain and anti spasmotic meds for Fibro I urge you to consider taking Magnesium. This will help with vitamin D uptake, spasms, neuralgia and thyroid hormone conversion. Take a look at Dr Sarah Myhill's ME/ CFS website and shop. Soluble Magnesium is good as well as topical. Also, Magnesium Malate has been shown to help Fibro patients, but has less Magnesium in it than some others. Start on a low dose and build up slowly as too much too soon doesn't work. Lots of evidence around that low t3 is often a big factor in the presentation of fibromyalgia. If your t4 isn't that bad, but your TSH is very high it seriously makes me wonder about your conversion efficiency.
thyroiduk.org/managing-your...
Thank you for the tips I will take action on both. I hope that with my thyroid function being addressed it may help the fibro - fingers crossed!
... levo will only help if all nutrients are optimal - sigh ! I know because I rattle !!
Fibromyalgia is frequently misdiagnosed hypothyroidism or inadequately treated hypothyroidism
Standard starter dose is 50mcg levothyroxine
Bloods should be retested 6-8 weeks after each dose increase
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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood 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)
No point testing Ft3 at this stage .....it’s going to be low as you are currently very hypothyroid
guidelines on dose levothyroxine by weight
Even if we 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 on full replacement dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
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.
gp-update.co.uk/Latest-Upda...
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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
xox
I need a rant but also any help you can give.
Can someone help me please (if you can)
METAVIVE can you help please
