New and need advice please

[edde]

After 6 months of feeling abnormally exhausted, unable to retain information etc, dizziness, nausea, clogged up nose and near vomiting each morning, I now have started on betahistine 24mg (though take half dose as gives tummy pain) for confirmed inner ear infection, levothyroxine 50mcg for confirmed hypothyroid and cortisone nose spray. It's nearly 2weeks and I start to feel more awake but I'm still exhausted and with brain fog. How long does it take to improve? I'm on sick leave from work (primary school teacher) and do not feel up to returning. Any advice most welcome as my dr isn't very supportive and tells me I'm sensitive as its only a small thyroid problem.

[shaws Administrator]

Welcome to our forum,

You have, unfortunately, a doctor who is insensitive - who is absolutely unaware of the effect of a dysfunction of our thyroid gland. He knows absolutely nothing except, I assume, only the TSH level: Excerpt:

Thyroid stimulating hormone is produced and released into the bloodstream by the pituitary gland. It controls production of the thyroid hormones, thyroxine and triiodothyronine, by the thyroid gland by binding to receptors located on cells in the thyroid gland. Thyroxine and triiodothyronine are essential to maintaining the body’s metabolic rate, heart and digestive functions, muscle control, brain development and maintenance of bones.

You now have to read and learn and ask questions in order for you to recover your health and by reading the above it would appear you are also far more advanced than GP.

Your doctor is unaware how important our thyroid gland is in running our metabolism, our heart etc.

If you take your pulse and temp you will probably find these are low and will become normal when you're on an optimum dose. Sometimes they don't come back to what they were but you'll feel better I will give you a link later on how to take a Basal Temp (just to use as a guide as many doctors are unaware that our temp/pulse reduces with hypo. Plus all of the other clinical symptoms we can have. There are about 300 but thankfully we don't get all of them

You are on a starting dose, 50mcg of levothyroxine and you should have a blood test every six weeks until you feel well again with no clinical symptoms.

Always take levo first thing with one glass of water and wait about an hour before eating. Food can interfere with the uptake of the hormones (levo).

Any other medications must be taken at least 2 hours apart from levo (some leave 4 hours).

Always get a print-out of your blood tests from now on and make sure the ranges are stated for your own records and you can post if you have a query.

Always make the earliest appointment and fast (you can drink water). Leave about 24 hours between your last dose of levo and the test and take it afterwards.

Ask GP to test your Vitamin B12, Vit D, iron, ferritin and folate as we can be deficient and can cause problems.

The aim is to bring your TSH down to around 1 or lower. Not as I would imagine your doctor would think anywhere within the range - the highest is around 5. That is no good for someone with hypothyroidism, it's o.k. for testing someone who isn't hypo.

Doses are increased by 25mcg each 6 weeks approx until you feel so much better and your symptoms diminish.

Hypothyroidism is a serious disease if untreated and you have to take care of yourself and your health due to your doctor's attitude. It is so serious that all of us (in the UK) get all other prescriptions free for whatever it is that ails us for life.

healthunlocked.com/thyroidu...

[edde in reply to shaws]

Thank you so much for that. It feels so overwhelming the lack of support. My next blood test is 10wks after starting meds. My dr says its only important now to measure tsh levels and nothing else. I have checked around and have hopefully found an endocrinologist dr who specializes in treating ppl with thyroid problems, so see him in 2 days. All I want is to feel well and be on sick leave until this happens. Getting no support from work and nobody seems to realize how hard it is being unable to do basic things just for my family. I'm so glad to have found this site!

[shaws Administrator in reply to edde]

Regarding your thyroid, I would ignore anything your doctor says about it. Ten weeks is too long as being on too low a dose can backfire somewhat and we can feel much worse with additional symptoms.

Usually, a test is done every six weeks as I did (some are told 8 weeks) but I think that's too long . Then you have a 25mcg increase every six weeks, not every ten weeks, until we feel much better.

At your next appointment with your doctor ask him, how many thyroid hormones does my thyroid gland issue and what is the most importan?. Let me know what he says but I'll tell you now it is T3 otherwise known as liothyronine but don't let on you know that.

If we don't have sufficient T3 entering our receptor cells T4 (levothyroxine) has to convert to T3 and are doctors aware of that? Sometimes I doubt it. Obviously not if they are only concerned with the TSH. The TSH is fine as long as the patient has an optimum of hormones that their symptoms disappear and they feel fine. Thousands do fortunately but others, mostly on this forum are failed by the medical professionals and suffer unnecessarily so and are forced to buy alternative to levo. They are given a myriad of medications for their clinical symptoms but not sufficient thyroid hormones because their TSH is in range, so the prescriptions are more or less useless.

Levo might work marvellously for you and I hope so. If your GP refuses to test T4 and T3 it might be worthwhile later on if you aren't improving is to get a private blood test.

thyroiduk.org.uk/tuk/thyroi...

[shaws Administrator in reply to edde]

No one who has never had problem with their thyroid gland can ever know what it feels like if it is failing. T3 the Active thyroid hormone drives our metabolism, i.e. heart and everything else in our body.

I never had any idea myself but neither did any of the doctors I saw and consulted over about 3 years. They all gave different answers and I even had a procedure under anaesthetic after a wrong diagnosis. I only found out after I came round and when I asked 'well whatever was it on the barium swallow' - I got no answer. I could go on and on as can most of the members.

Most illnesses last a few weeks and we're back to work in no time.

[SeasideSusie Remembering]

"Only a small thyroid problem" - what an idiot of a doctor, what a stupid comment. Your doctor needs educating.

Shaws has covered it, I can't add anything to her great post.

[edde]

5 months ago when I first went to my dr after nearly collapsing at work, he ran a blood test checking everything. Tsh showed 4.210 when the range it should've been inside is 0.27 - 4.20. So my dr told me he didn't think there was any problem with my thyroid and that I felt the way I did because of exhaustion (new stressy job). He also ruled out my inner ear problem, though I complained of dizziness and tinnitis.

Nearly 2 months later I still had same symptoms, if not worse. He ran a blood test on t3, t4, tsh, anti-thyroglobuline and anti-thyroperoxydase.

My t3 was at 3.5 (levels are supposed to be between 2 - 4.4).

My t4 was at 10.8 (levels should be between 9.3 - 17).

My tsh was now at 6.07.

Anti-thyroperoxydase was at 304.4 (levels should be less than 34).

So I'm told its an auto-immune problem and that I will be on meds for the rest of my life.

My last blood test 3 weeks ago showed t3 at 3 (so slowly decreasing), t4 at 9.5 (also decreasing) and tsh at 7.89 (increasing).

The endocrinologist I was referred to prescribed the starting dose of levothyroxine which I have started and feel worse if anything. I have another blood test to do in May but this only checks tsh and t4. I've just found another endocrinolgist who sounds as if he'll treat me as a person and not just my test results - appointment is tomorrow. I also return to my own dr to try and get longer sick leave.

Some questions:

Is it important for t3 to be checked too?

The fact that t3 and t4 are decreasing - what does this mean? Will the meds help this?

Could I have hashimoto and if so is treatment any different? Is it important to know?

Is it important to do a scintigraphy?

What things should I be asking?

I find I must write down everything as my brain isn't working right and I can't think straight and am having memory lapses. This is all so very complicated!

[edde]

The endocrinologist has upped my dose to 75mcg. I must do a blood test in 2wks to check levels. He says since my levels are minimal he doesn't believe I must take meds for life. He wants me to stop taking meds in May and do another test. He also mentioned that vit d and calcium deficiency can make same symptoms.

I don't understand why he's upped dosage if he says my thyroid doesn't really need meds and that my symptoms could be something else. (Burnout?)

I also don't understand how meds can be stopped just like that?! Do they not need reducing first before stopping?

[edde]

Well I went to my dr for longer sick leave and he can't understand the endocrinologist plan either. My dr has now reduced my dose to 35mcg and says that I must be very sensitive to the meds. I asked if there were other meds instead of levothyroxin and he talked about one which is a mixture of t3 and t4 but he doesn't know much about it as its not the normal meds for hypothyroid.

Now waiting to see how my body reacts to 35mcg over the next 2 wks. :/