Hypo / hashi diagnosis - and so fed up! - Thyroid UK

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Hypo / hashi diagnosis - and so fed up!

BlueMorpho13 profile image
9 Replies

Hi everyone,

I’ve recently been diagnosed with hypothyroidism specifically hashimoto’s disease by an endocrinologist. My TSH and thyroid antibody levels have been high for over a year (never tested before that, they were high from the first tests) but I’ve only just put on medication after seeing a new doctor.

I’ve been taking levothyroxine 25mg for 6 weeks and I want to know when people started to feel better, and what ranges were their TSH / T3 / T4 levels in when they felt the symptoms ease?

I’m honestly exhausted. I wake up tired and go to sleep tired. I just about manage to do my job and other small things but the whole time it feels like I’m having to use every ounce of energy in my body to do those things. I no longer feel passionate about anything, all I want to do is get to the end of the day so I can be in bed again. I don’t want to socialise or even do anything with my fiancé, everything feels like a chore. I’m having to restrict my food because if I eat like a “normal” woman, I instantly gain so much weight. And even with how much I control my calorie intake I have still put on a disproportionate amount of weight in the last couple of years that I can’t shake off.

I also have endometriosis quite severely so the combination of the two just means I’m always either in pain and/or just completely fatigued.

No one seems to understand and I’m not sure how much longer I can “cover up” the fact that unless it’s something I absolutely have to do or really push myself to do because it’s important to those I care about, I spend all my time on the sofa or in bed feeling like a zombie (I live alone). I’m good at masking it when I have to - putting a smile on my face and getting on with things, but then when I’m by myself I feel like I “pay” for it by having even less energy and needing even more time to recover.

I’ve been saying that I feel more tired than I think is normal for years, and that it’s been getting worse, but all the doctors around me (including my parents who are doctors) paid little attention to it. Despite my mum having the same condition, diagnosed in her teens.

I was also feeling like my intelligence was decreasing / I was less sharp than I used to be for the last few years - and then I realised brain fog is a symptom too!

I’m 29. As a teenager / in my early 20s I was full of life. I was a straight A student, high achiever, got a job as a consultant and then a banker. I was extroverted and had a full social life and lots of friends. I was fit, worked out a lot, was up and going from morning to night without ever feeling it.

I know rationally that how I’m feeling now is a product of a disease and I have the proof of that on paper, but it doesn’t take away from how debilitating it’s been for me and how I don’t feel like myself anymore.

I would even be grateful just to hear some success stories because at this point in time it feels like it’ll never get better!

Thank you :)

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9 Replies
Sleepman profile image
Sleepman

I am pretty new too. It took about 3 months for me to get mostly better. 125 mg, my TSH was 79 I think. Started on 50 mg.

What are yout tsh readings? Your dose seems very low.The ATeam / experienced members will give you more advice.

They will ask about vitamin D and B12 and folate as your stomach is likely not getting these from your food.

Be kind to yourself. The kind people on here will help you move safely back to the real you.

crimple profile image
crimple

BlueMorphpo13, do you know what results your blood test showed for your Thyroid? You should have T4, T3 and TSH results. Can you post them with ranges in brackets. You are entitled to have copies of your results.

You have been started on 25 mcgm dose of levothyroxine and this is a low dose. You now need another blood test as above and no doubt an increase to 50mcgm of levothyroxine.

You should also have Vit D, B12, folate and ferritin tested. Often when diagnosed as hypothyroid our vitamins are low due to low stomach acid. Low vitamins mean that your body cannot use the levothyroxine to maximum effect.

There are no quick fixes for hypothyroidism and you have to be kind to yourself, especially with the added diagnosis of endometriosis.

Pearlteapot profile image
Pearlteapot

I felt exactly as you describe. I was also very energetic and active and high achieving, then my brain melted when I started on a too low dose of levothyroxine. It took a year for me to get my medication right. I am now significantly better but not quite as I was before. Even with the right medication there can be some bad days as the bodies needs are variable and medication can’t respond as flexibly as a healthy thyroid gland. None the less, I am pretty good and have returned to fairly intense yoga, swimming and am doing okay again at work.

You need to focus on getting your medication to the right level as soon as possible while increasing the dose at the right (not too fast) speed. Some guidelines put young people straight onto the estimated correct dose by weight, whereas older people tend to be titrated up more slowly. Someone will post the links soon I’m sure.

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Please add your thyroid results from before starting on levothyroxine.

plus vitamin D, folate, ferritin and B12 results if you have them

As crimple has said…starting on 25mcg is a low starting dose and almost always results in feeling worse

Bloods should be retested 6-8 weeks after each dose increase

ALWAYS test thyroid levels early morning, ideally just before 9am, only drink water between waking and test, and last dose levothyroxine 24 hours before test

No doubt you will be ready for next increase to 50mcg per day

standard starter dose is 50mcg unless over 65 years old, or heart condition

Likely to need several further increases in dose levothyroxine over coming months

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near 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.

Also here

cks.nice.org.uk/topics/hypo...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Geegee777 profile image
Geegee777

Hi, 3 years ago, I was exactly how you described when first diagnosed and for a good while after. Thanks to this most invaluable forum, my life is much much better now and slowly improving.I alternate between keto and paleo diet, which has been very beneficial and fast from 6pm after dinner and break my fast at breakfast 10am. I found out im gluten and lactose sensitive, so eliminated those. Just by eating what your body can tolerate is massively helpful. Listen to advice here and you will really help yourself. Good luck on your journey, be patient and very kind to yourself 🌸🌸🌸🌸🌸

EMBoy profile image
EMBoy

Welcome to the forum. You're feeling like rubbish at the moment, but don't worry, you will get better, even if it takes some time.

As a man, I can't identify with endometriosis and I don't suffer from all the unpleasant hormonal changes that women have to put up with, but I can identify with the awful feeling that hypothyroidism gives.

Like you, I was very overweight and feeling tired all the time (if I sat down for more than about 5 minutes, I would fall asleep). My brain was like mush. There were many other unpleasant symptoms that I won't go into here.

I started off on 25mcg and my dosage was gradually increased in association with regular testing until I tested "normal". This process took about 2 years, and I am now on 175mcg.

Weight gain in hypothyroidism is due to a mixture of low metabolic rate and myxoedema which is a build up of fluid containing mucin under the skin. Once treatment is sorted out, metabolic rate increases and myxoedema improves and this may lead to weight loss. I lost a couple of stone in the first 6 months.

I can't promise you a rapid recovery, but if you stick with it, you will gradually get better and better and will be able to live the same lifestyle you had before. You are still young, so will probably recover more quickly than I did.

Best wishes!

klr31 profile image
klr31

You most likely need an increase as 25mcg is a starting dose only.

Karen

HowNowWhatNow profile image
HowNowWhatNow

Hi

Has your dose been upped yet?

25 mcg is so little.

I take 150 mcg, a dose which is on the high side but which was needed to get my TSH down to a normal level. Alongside T3, because levothyroxine did not vanquish my brain fog. A combination of gluten free diet, levothyroxine and T3 are what I - now know I - need to function.

I can so relate to the bare minimum feeling you are going through and to the difficulty of explaining your health and energy levels to other people or of explaining it to yourself, when you used to be a person who could thrive in a fast-paced corporate environment and now feel fuzzy.

Good luck.

HowNowWhatNow profile image
HowNowWhatNow in reply to HowNowWhatNow

Oh and I meant to say it took me 7 years but after not getting any real help on the NHS - not even during pregnancy - I went privately, which is how I now feel better.

I couldn’t get a referral to an endo on the NHS, which I think is fairly standard. If you do, argue hard for better treatment!

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