Wondering how quickly I will feel better? Just diagnosed TSH 78.

[Harribear]

Just diagnosed this week after the doctor sent me for bloodtests because I was feeling depressed. I wasn't expecting anything to show up as I've always been tired as long as I can remember, but they rang me to say I have a tsh of 78 and have given me levethyroxine 100mg. I was just hoping someone could give me an idea of how soon I will begon to feel better. I am so fed up of having no energy.

[SlowDragon Administrator]

Welcome to the forum

Have you actually started taking levothyroxine yet?

You might see some improvements in 1-2 weeks, but 4-6 weeks more likely

Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

Has GP tested vitamin D, folate, ferritin and B12 or thyroid antibodies

No other medications or supplements within 2 hours

Some like, HRT, calcium, magnesium, iron supplements at least 4 hours away from levothyroxine

Which brand of levothyroxine have you started on

As you have started on high dose, GP should retest thyroid levels in few months

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Always get actual results and ranges on all your tests

Keep good record of how you feel

[Harribear in reply to SlowDragon]

Thank you so much for the reply. I have been taking levothyroxine sodium for 4 days now and feel pretty shaky in the mornings, but work is very stressful at the minute as well, so it may be that. I am on hrt as well, so I am taking that in the evenings now along with antidepressants. I am due for a recheck in May and I will ask them about B12 as mum can't absorb it and has to have injections. I can't believe I've felt so bad and just thought it was normal.

[McPammy]

My GP use to send me away saying I had depression although I knew it wasn’t that. I requested 5 separate times for a thyroid test but they refused. Eventually they did a thyroid test and my TSH was 37. Not as high as yours though! I too was prescribed 100mcg Levothyroxine a day. I felt better in about a month. But I still did poorly. 11 years later I found out I’m a very poor converter of Levothyroxine to the most important hormone T3. Please also get this checked if you don’t improve significantly by about 6-8 weeks. Your TSH needs to be around 1.00 and your T4 level needs to be midway in your blood test if you follow the guidelines by not taking your Levothyroxine prior to the test. Once you ingest your Levothyroxine your level will increase. You don’t want to go over your T4 level. I do hope you feel better with more energy very soon. Also please get your B12, ferritin, Vit D and folate checked as these often are low for people with thyroid conditions. Not all can be effected but one or two may be.

You are on the road now to recovery 👍

[Harribear in reply to McPammy]

Thank you so much for your reply I really appreciate it. My doctor sent me for throid and anaemia bloid tests when he put me on antidepressants 'just to rule it out'. I am very thankful he did. I don't think if work hadn't been so awful recently I would have been to the doctors at all, but I was just feeling so stressed, tired and like I couldn't do my job properly. I will definitely follow your advice and I will especially get checked out for B12 as i know my mum can't absorb it and needs injections. In some ways I'm pleased that I am diagnosed, for at least it means there's a reason for feeling this way. Onwards and upwards 😊

[shaws Administrator in reply to Harribear]

My mother had pernicious anaemia, and so do I. The usual treatment is an injection of B12 three monthly.

My mother's doctor told her she needed no more injections as her 'bloods were fine'. Unfortunatley, due to her doctor's decision my mother developed stomach cancer due to GP stopping her injections.

I have a B12 injections every month in agrement with my GP who said I can have as many as I feel I need.

[Harribear in reply to shaws]

Oh no! Thats terrible that they stopped her injections. My mum has them three monthly as well.

[SlowDragon Administrator in reply to Harribear]

Suggest you request vitamin D, folate, B12 and iron and ferritin tested now

Important to tell GP that your mother has Pernicious Anaemia

[Harribear in reply to SlowDragon]

Ah ok.... Will definitely do that. I have an appontment very soon. Thank you x

[SlowDragon Administrator in reply to Harribear]

Plus you need thyroid antibodies tested to confirm autoimmune thyroid disease also called Hashimoto’s

Testing for high TG and high TPO antibodies

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

As your Mum has PA (autoimmune) it’s highly likely you have autoimmune thyroid disease

Assuming you do have high thyroid antibodies you need coeliac blood test too

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1 Offer serological testing for coeliac disease to: people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

[Harribear in reply to SlowDragon]

Thank you for all the links..... I definitely have some reading up to do!

[Lulu2607 in reply to Harribear]

Hi Harribear. I had TSH of 161 when diagnosed in April 21. I had very severe symptoms for some time, but appointments were over the phone during Covid. This meant I couldn't show them how ill I was. I looked, and felt awful. Puffy face and eyes, thin hair, eyelashes broken off. No body hair, weird spare tyre and swollen stomach and uncontrollable crying fits. I started on 50mcg, which was increased gradually to the 100mcg I take now. After six weeks I could definitely see and feel improvements. I lost weight quite rapidly ( but hadn't put a lot on due to poor appetite and difficulty swallowing.) My digestion improved and my hair started growing again. It took about six months to see a real difference. Now, 10 months later I feel and look an awful lot better. I still feel quite anxious and don't sleep well but I think that might be because I was so ill for a year before being diagnosed that I ended up giving up my job ( they weren't very sympathetic) and haven't really settled or recovered emotionally yet. All I can say from my experience is that I was amazed at how my body started to recover but it's a slow journey and your medication will need to be reviewed frequently until your TSH and T4 are at the right level for you. Be patient and look after yourself with a good diet and plenty of rest.

[klr31]

It takes a while so try to be patient.