I am really struggling, I am wondering if I have hashimotos.
Diagnosed with an underactive thyroid in march ( the day my dad died) just 6 months after losing my mother in law. Had gone to the drs thinking my HRT needed tweaking for my perimenopause symptoms. (Hair loss, brittle nails, weight gain, sweating, cold feet, aching painful joints, dry skin, brain fog)
Started 50mg levo and initially felt better. But now I am feeling rubbish again. Mainly exhaustion, aching joints, brittle nails and dry skin. My tongue has a white coating and is scalloped. I am aware you can experience thyroid flares, when stressed. Grief has hit hard and my husband is immobile due to a bad break to his leg which required surgery so am under alot of strain. I don’t know where to turn??
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Vorney
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Now you are here you’ll find many members offering advice & steps to help you see your way through.
First step start collecting blood test results. You are entitled to have them but you will not be offered them by your doctor or any one at practice, you need to request a print out with ranges or set up online access, usually via reception is easiest way.
Once you can track your results you can see where you need to be in terms of advocating for the best level of treatment.
50mcg levo is a standard starting dose. Initially you felt well because the introduction on replacement topped up your thyroid levels but after 6-8 weeks the out put of your failings thyroid will reduce and you need an increase, usually 25mcg per day & continue every 6-8 weeks until TSH always under 2.
Most say they feel well when FT4 is top 3rd of range & FT3 is at least half way, but see what is tested, as often dr go by TSH. The TSH thyroid stimulating hormone is the pituitary hormone signalling the thyroid but it is not reliable you need thyroid hormones tested. FT4 & FT3.
Most hypothyroidism is hashimoto’s or autoimmune thyroiditis. Drs just refer to under active thyroid. You can confirm the cause with positive TPO & TG antibodies, these may already have been tested but the treatment for hypothyroidism is the same no matter the cause.
Scalloped white tongue is a common issue with low B12 & low nutrients is common with abnormal thyroid. Levo often doesn’t work well with poor nutrients as levels often need to be optimal for T4 to T3 conversion.
See if Doctor will test B12, folate, ferritin & vitamin D. Thyroid function is TSH , FT4 & FT3. Thyroid antibodies is TPO & TG antibodies.
Recommended that you arrange blood test - Early in morning, fast overnight. Delay any replacement until after draw. Stop biotin prior to test. This gives consistent testing.
If Doctor won’t test everything there are private options
Many use private testing companies by using a fingerprick kit at home via post & results available online. This is often the quickest way to gain a complete picture. Medicheck thyroid advanced might be good option.
It's usual to feel better on any dose of thyroid hormone, and then find the symptoms come creeping back. That just means that you're ready for an increase in dose.
How long have you been on 50 mcg? Six months? That's far too long. You should have been retested and your dose increased after six weeks. 50 mcg is just a starter dose, and your doctor is being negligent if he didn't tell you when to go back for a retest.
I am aware you can experience thyroid flares, when stressed.
Well, that's not exactly right. Stress can make you feel worse, of course. But when people talk about 'flares', they usually mean they're having a Hashi's 'hyper' swing. You could have Hashi's, of course, but to know that you would need your antibodies tested. Either that or an ultrasound of the thyroid. There's no other way to know. Symptoms won't tell you.
A Hashi's 'hyper' swing (aka 'flare') happens when the immune system attacks the thyroid, and the dying cells release their stock of hormone into the blood. This causes the FT4/3 to rise sharply, and the TSH to drop. But it's only temporary. And, if you feel hypo, it's not that. But, again, a blood test is necessary to be sure.
The best thing to do is to go back to your doctor and tell him you want your long over-due thyroid blood test, and an increase in dose. When you have the blood test, make sure the blood draw is early morning - before 9 am - and fast over-night. Leave a gap of 24 hours between your last dose of levo and the blood draw. And, after you've had it, make sure you get a print-out of your results - it's your legal right to have on - and post the results and the ranges on here, so that we can help you understand them.
Yes, but their idea of 'normal' would probably not be yours! Just getting TSH back any old where into range does not make it 'normal', and 1.57 is still on the high-side. But, your doctor should not be dosing by the TSH. That is wrong. He should at least be testing the FT4, because whilst the TSH might be 'good', the FT4 - the thyroid hormone - could still be low. TSH - a pituitary hormone - is a very bad indicator of thyroid status when it gets lower. Although, obviously at over 8 it's too high.
What you really, really need to do is ask at reception for a print-out of all your test results up to date. You are legally entitled to have them. If they refuse, they are breaking the law. If they ask why you want them, which they're not really allowed to do, just tell them it's for your own personal records. You need to know exactly what was tested and exactly what the results were. I'm afraid you cannot just rely on doctors to know what they're doing when it comes to thyroid and nutrients. What did they say about the B12, folate and ferritin? You also need vit D tested.
Bloods should have been retested 6-8 weeks after any dose change or brand change in levothyroxine
Typically dose levothyroxine is increased slowly upwards in 25mcg steps……over 12-18 months
Unless extremely petite you are likely to eventually be on at least 100mcg levothyroxine daily
Have you had any blood test since starting
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Get bloods retested now via GP ideally
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
I assume I am not alone in finding it difficult to understand all the relevant blood tests needed/and what it all means?? Probably the best way to explain how I am feeling is I am running on empty??
I did have another blood test in May and was just told everything is back to normal and carry on with levo
1) get actual results and ranges of test results from BEFORE starting on levothyroxine and the follow up test in May
2) contact GP explain how you feel and request new thyroid test, including thyroid antibodies and vitamins
Book EARLY morning test, ideally before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test (take your levothyroxine after blood test)
Get copies of results
Highly likely you are more than ready for next increase in dose levothyroxine to 75mcg
Bloods then retested again in another 2 months
And this repeats until on high enough dose and all symptoms resolved
Typically that’s eventually approximately 1.6mcg levothyroxine per kilo of your weight per day
Extremely important to maintain GOOD vitamin levels too, testing at least annually
Many (most) people on levothyroxine find they need to supplement vitamin D, magnesium and vitamin B complex
Like you, my thyroid problems began when my Dad died-but that was in 1980. It can be triggered by stress apparently. Brought under control with meds over 2 years, stable until 2000 until I had a Thyroid nodule when I was underactive, and been treated since then with thyroxine. Now I have finally been prescribed T3 by the Endo, but the GP is reluctant still!! This is a great group, and so knowledgeable, glad you found it, and good luck with getting sorted out!
Get the blood results from the GP - just ask for them, they cannot refuse and they are free. You will see what "normal" means to them, maybe just a smidge above the lowest level and they think you are fine. It does not work like that - normal for them is not normal for you. It sounds like your body is shouting at you for more thyroid hormone - so listen to it. Your GP should have retested you and discussed with you whether you think you need to up you Levo dose. Go back and tell him your symptoms have returned and you would like to try an increase in dose. In the meantime, get your results and post them here for further help.
I spoke to my Dr, told her how rubbish I was feeling. She thinks my joint pain is peri menopausal related so upped my oestrogen. 2 weeks later I am still in pain daily.
I asked for a full blood test incl testing for antibodies to rule out hashimotos. Get there Monday and the form is just for TSH and serum T4??
Results back tonight on my gp app:
TSH is 4.24, it was 1.57 in May and 8.14 in March before I started levo
The serum free t4 is 10.8 , it was 10 in march.
I am at a loss as to what to do? My symptoms are coming back with a vengeance, but know they will just say “your in range”??
Ask for an increase. That is a high TSH low FT4 for someone on levo, & you don’t know your FT3. Based on TSH & FT4 there is so room to increase & still be in range. You have symptoms that are not resolved so if doctors says you don’t need an increase because your in range say you are not in your range, you have symptoms.
So managed to speak to my dr, they had tested for antibodies which in his words “were through the roof”, he said no wonder I have been feeling so rubbish with so many symptoms (my voice has become hoarse the last week too)so, definitely Hashimotos.
He said most drs would increase my dose to 75, but due to my results and symptoms he wants to double straight away to 100.
I feel so relieved, as felt like I was going mad. When I look back over the years, I have had so many symptoms building up, started to feel like a hypochondriac. I was really unwell last Christmas with awful vertigo, Covid for the 6th time that went to a lung infection , awful fatigue, dry skin, hair loss, brittle peeling nails. Thank you for your advice, much appreciated
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