Hypo or Hyper?: I have been taking Levothyroxin... - Thyroid UK

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Hypo or Hyper?

RattyPatty
RattyPatty

I have been taking Levothyroxin 150 mcg for some years. 10 months ago I registered with a new doctor and had blood tests. He said my results were borderline and reduced my dose to 125 mcg. During this period I have put on 12 lbs, lost a lot of hair plus all the symptoms associated with hypothyroidism.

I saw another doctor at the practice today who, on looking at my record, told me that I wasn't just borderline 10 months ago but actually hyperthyroid. (It would have been nice to have been told). I have no figures to give you and I have had a blood test today so awaiting result.

I am now left wondering how I can be hyperthyroid without having the symptoms associated with it. Is this possible? I can't find an answer online and would like to get some information before the doctor phones me with my results.

Thank you.

10 Replies
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SlowDragon
SlowDragonAdministrator

If your on Levothyroxine for being hypothyroid you can not become hyperthyroid

You can be slightly over medicated, or you may have autoimmune thyroid disease (also called Hashimoto's) where levels fluctuate

There is a recent obsession with only treating by looking at TSH. On Levothyroxine TSH should be low. But many medics don't seem to grasp this

It is completely inadequate to just test TSH or just TSH and FT4

You should have had repeat blood tests 8 weeks after dose was reduced - did you?

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer 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.

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 Thyroid antibodies are raised or if under treated

Low ferritin can cause hair loss

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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 Or vitamins

thyroiduk.org.uk/tuk/testin...

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 antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Thank you for your reply. I didn't have a follow up blood test after dose reduction and realising now that I should have done. I don't intend being fobbed off again so am trying to gather information. I have only just found this website. I was confused by being told that I was hyper after many years of being hypo. I am 72. I am going research Hashimoto now.

Bet he was judging on TSH and claiming you were over medicated because it was below normal ranges. You have to use the info on this site to fight this as the doctors will make you ill and keep you ill if you don’t.

I’ve posted the below before a few times so apologies if you’ve read it already, but just in case it helps - I’m on T4, but you might find the comments about hashimotos and over-medication useful in your battle to be well.

I see an endo privately which I know isn’t an option for everyone, but he’s very understanding and is a thyroid specialist.

Last time I went to see him my blood results showed my TSH is now plunging into the nether regions, my T4 and T3 are about 50-55% of the way through the range and I still feel like cr*p, though not as cr*p as the cr*ppest I’ve felt. He is happy for me to continue to increase Levo. What he said was interesting - he said most Doctors understand underactive thyroid as that is relatively straightforward, but they don’t understand hashimotos, which is more complex to treat as it is difficult to stabilise your levels. GPs just treat it in the same way as underactive thyroid but it isn’t the same. He said that the TSH does strange things with hashimotos as the pituitary doesn’t know WTF is happening as the thyroxine from the thyroid waxes and wanes. So basically the pituitary loses the plot and TSH tends to go low.

My endo also acknowledged what I have always thought that despite doctors saying synthetic thyroxine is just the same as our own, it isn’t and many struggle to convert it. This means the TSH responds to the level of T4 and goes low, but we actually struggle to manufacture T3, so need to take more of the synthetic T4 stuff than we would have to produce of our own - even more than the normal range for T4 for some people to be able to make/convert into adequate active energy and therefore to feel well.

The combination of hashimotos and synthetic T4 creates a perfect storm. Therefore other than T3, patients should not be assumed to be well just because they fall within the ranges and a low TSH is fine if there are no signs of being over medicated e.g. high FT3, heart racing, tremor etc.

There are physical tests your doctor can do to check if you are over-medicated - pulse rate, check the heart rhythm, extend your arms and see if there is tremor in the hands etc. You can take your temperature and heart rate on waking every morning and record these to show your doctor as proof too. Despite my TSH being low, on waking my temp is usually 35.2 and my heart rate 56!

Do battle - and good luck. Tell your doctor to dose the patient not the blood test. If you were over-medicated, believe me, you would know. When I was over-medicated it was scary, heart racing and pounding if I just stood up, feeling nauseous etc- you would want to reduce if that was the case!

Good luck. #fightforyourthyroid 🤸🏿‍♀️

Thank you. I await with interest my results on Monday. I was happy with my dose for a good few years and was surprised when it was lowered but put it down to seeing a new doctor in a new practice. I have since read that changes can occur due to stress. One year ago my husband and I packed up our home of 50 years in 17 days. Even now I don't know how we did it. (We were almost 71 and 78 so no youngsters). Two months later I saw the doctor at my new practice who decided to lower the dose. I most certainly don't feel hyper. The complete opposite. That's what I don't understand. Maybe this blood test will show that nearly a year later with no particular stress that I am indeed hypo. Otherwise I will probably get stressed out fighting the doctor.

I am willing to see an endocrinologist privately if necessary but wonder how the GP will react to being advised by one.

Hopefully I will get my results from the GP with no problem then I will put them on here.

Well the doctor phoned me this evening and I managed to write down a couple of results. My TSH is 0.01 and my T4 is 32. ( I appreciated him phoning Friday evening so I didn't want to harass him. I will call in the surgery on Monday and see if they will give me the rest of my results). He is now reducing my dose again from 125 mcg to 100 mcg ( 10 months ago I was on 150 mcgs and feeling ok). He says imy results show I am hyper. I asked him how that could be possible when all my symptoms relate to being hypo. He said he didn't know. Blood test again in 6 weeks so I will see how it goes.

You need the reference ranges for your T4 and to check if it is FT4. Without it the number means nothing. x

Thank you. Will try and get more info.

Watch out as well as they will use your age as a reason to reduce the medication as some studies have shown for some people, particularly in some age groups, in some circumstances, low TSH might be linked to a loss of bone density and or heart issues. I’m deliberately making that sound vague as I think the studies supporting this thinking are. If he goes down this route a) ask for a dexa bone scan to see if your bone density is okay b) ask for your doctor and a cardiologist to check your heart rhythms. Don’t let your GP make you ill because there might be a chance of something, maybe, perhaps but maybe not. It is up to you to consider the risks and there are plenty of studies that people on here have posted that suggest this is a real area of contention. I’ve told my endo if it gets to a choice, I personally am prepared to gamble on the risks for quality of life. Good luck. 🤸🏿‍♀️

I have my results now.The first lot are from March last year when my dose was reduced from 150 mcgs to 125. Mcg. I wasn't told I was hypo just borderline. The 2nd result is from last week and the reason given for reducing my dose again to 100 mcg. as I was hyper.

Free T4 level (XaERr). Above range. 41pmol/L (10.0 - 22.0). Above high reference limit.

TSH level (XaELV). Below range. <0.01mu/L (0.3-5.5) Below reference limit.

---------------------------

Free T4 level (XaERr). Above range. 32 pmol/L (10.0 -22.0). Above high reference limit.

TSH level (XaELV). Below range. <0.01 mu/L (0.3-5.5)

Below reference limit.

I would be happy to accept the results if only my symptoms corresponded with them. I have been hypo for years but now I am hyper but with hypo symptoms and the doctor can't tell me why.

SlowDragon
SlowDragonAdministrator
in reply to RattyPatty

Highly likely the stress of last year had affected your results

Vitamin levels need testing

Possibly cortisol too

Start with full Thyroid and vitamin testing privately

Come back with new post once you get results

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