Was diagnosed with under active thyroid in Oct 2019. Given 50 mcg of levothroxyin . Seemed to perk me up . After 12 weeks Xmas time I got bloods done and dr happy with them no need for a higher dosage .
Now I feel worse than I was back in Oct . So tired . Hair breaking of again . Joints in agony . Have put on weight sweats are unreal . Should I go back . Also been constipated and really bad stomach cramps
Feel terrible
I’m the exact same as you, but my dr had been less than helpful. Is your dr aware that you’ve still been experiencing symptoms? When you say the dr was happy with your levels do you know what your levels actually are? If I was you I would go back to the dr and stress how bad you feel xx
He just said my levels had went up . But slowly I feel it has went back the way. I am exhausted all the time . And then can’t sleep at nights for pains especially my legs
I haven’t been on here long or diagnosed myself for long either, but it’s always advised to get copies of your blood results so you can monitor your levels and over time you can work out where you feel best. Worth making an appt at the drs and whilst there asking at reception to either access all records online or have printouts of all blood test results. Some drs ideas of ‘normal/fine’ are far from where you levels need to be for you to feel good xx
I’m sure slowdragon or one of the other knowledgeable people on here will be able to help you more soon xx
I am going to call tomorrow . Can’t take feeling like this . Thank you . Hopefully slow dragon can inform me of what to say or any advice
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone 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.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
Come back with new post once you get vitamin and antibodies results
Request 25mcg dose increase in levothyroxine
(If GP still reluctant insist on referral to endocrinologist)
I am no expert but you need to get a print out of your results with ranges. You may need an increase of you are feeling exhausted. 50 mgs is not a high dose. If you put your results the administrators can gauge what is going on.
Thanks I will . Dr actually ( well another dr) assumed I was going through menopause. I take it symptoms same
Can be similar as I started with underactive thyroid at about menopause. But underactive made me much worse. I had to start on 12.5 going up to 25 mg when my body adjusted and very gradually until I am now on 100 mg. I had felt tired, brain fog, muscle aches with just walking from the car park to about 100 yards, very cold and tired with a continual weight on my head and searching for words when I spoke. In short I thought I was dying. Although I have not perfect health I feel so much better.
Exactly how am feeling . Thanks
You need an increase then. Go to doctor and tell him the exact symptoms. Do not suffer. If he will not increase then ask to be referred to an endocrinologist.
Will do . Thanks . Did feel
A bit better nearing the end of 3 rd month but from middle January I have slowly went backwards. And today I just feel really down with it all tbh
Optimal dose is when you feel well not necessarily the blood test results. I only feel well when my TSH is 0.02 which is suppressed.
50mg is a starting dose. You need 25mg more and then retest 6-8 weeks after you begin the higher dose. That’s how you proceed, in 25mg increases and 6-8 week tests, until you feel better and stay that way.
Yes I agree fancy pants. Mind you I did have to start on 12.5 mg as I got palpitations every time I increased. Very much had to go on how my body reacted each time.
I am getting funny feelings on my heart . Not palpitations but more a shudder !! Even when doing nothing . Not all the time but I have noticed this . As if it stops and starts . Very weird
If it is a flutter maybe tell your doctor but normally could just be while your body is adjusting or even it could be that you are still underactive. If you are concerned speak with your doctor.
I am it’s quite scary especially when I am not exerting myself in any way
You are legally allowed copies of your blood results if you live in the UK, when you have the copies post on here with the ranges and somebody more knowledgable will comment on them. I have started keeping a file of my results for future reference. I only have to ring up and I can pick up copies within the hour. Unless of course you have online access.
Hi called my surgery got readings. I don’t know what it all means
Sept it read 3t4. (9.0) -tsh(27.5)
Nov. 3t4 -(17.3)— tsh(1.63)
Feb 3t4-(15.5)—tsh(3.81)
Wits the result off this information. I see they have went up . So why am I feeling so bad
Nov time I felt really good
See a different GP
You need 25mcg dose increase in levothyroxine and bloods retested in 6-8 weeks
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
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 if these have not been tested
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and 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 you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
monitormyhealth.org.uk/thyr...
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Extremely common for GP to be reluctant to increase dose
We do frequently need to start slowly, but dose needs to increase up steadily
healthunlocked.com/thyroidu....
gp-update.co.uk/Latest-Upda...
NICE guidelines
cks.nice.org.uk/hypothyroid...
The initial recommended dose is:
For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.
This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.
New NICE guidelines
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.
BMJ also clear on dose required
Levothyroxine should always be taken empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more effective taken at bedtime
verywellhealth.com/best-tim...
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet. So to avoid Teva use 50mcg plus 25mcg or cut a 50mcg in half
healthunlocked.com/thyroidu...
Thank you very much . Just in at work now . Going to be a long day
This is one of the problems of getting results over the phone. You can mishear or some other sort of mistake can be made. The receptionist didn't say 3T4, she said Free T4 - at least I hope she did, but maybe her pronunciation isn't very good.
And, of course, we need the ranges. Had you requested and collected a print-out, the ranges would have been on it. However, we don't need a range for the TSH, and that is too high. The purpose of levo is to take your TSH down to 1 or under, and the FT4 up to the top third of the range. So, whatever your doctor thinks, you do need an increase of 25 mcg of levo.
You are feeling bad because you are still under-medicated.
50mcg is a starter dose and should have been increased by 25mcg after your blood test. I see your TSH is still too high and should be 1 or lower and your T4 and T3 should be in the upper third of the range.
Doctors saying they are normal . Got another apt on 5th March . I cannot gobon like this
My GP told me my results were normal for over 2 years and I had hyperthyroid. Read my story on my profile page.
Same with MeV. Going through menopause . Blood that low I passed out at work . Tried this that. Eventually got a you dr at surgery and it was her that checked my thyroid . My hair is so thin . No energy what so ever . I dnt recognize myself . I was a( hyper) person . All my life . Then this has crept in . I dnt understand the levels . Obviously I was going to feel better on the first lot of Levothyroxine. But not now
You need an increase of Levothyroxine and you keep increasing it until your levels are right for you. Also low vitamins can cause hair to thin so you need to test B12, Iron and Ferritin, Vitamin D and folate. If you have low ferritin that can cause hair to thin. People with thyroid disease can have low vitiamin levels. When you see your Doctor ask him to test those. I doubt he will test T3 because of NHS guidelines so you might have to do a private blood test. I use Medichecks and they give discount codes through this site.
Vast majority of hypothyroidism is due to autoimmune thyroid disease also called Hashimoto’s
Low vitamin levels are extremely common
Ask GP to test vitamin D, folate ferritin and B12 as well as thyroid antibodies
Painful joints frequently low vitamin D
ncbi.nlm.nih.gov/pubmed/286...
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
endocrine-abstracts.org/ea/...
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
Night sweats low B12
bmj.com/content/349/bmj.g52...
ncbi.nlm.nih.gov/pubmed/186...
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
Hair loss often low ferritin
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