ADVICE NEEDED 1

[Cockerpoo]

Hi Fellow sufferers.

I was diagnosed with hypothyroidism in December 2017. Like most on here, it has been an uphill struggle getting anywhere with the doctor. They prescribe Levothyroxine then send you away as if that’s problem solved. You go back time and time again saying you don’t feel any better and they do more blood tests and keep repeating that your levels are ok so go away and don’t worry, you are a 53 menopausal women, how do you think you are going to feel.

Luckily for me but not lucky for her, my daughter mentioned that her friends mum was having similar problems she was diagnosed in December 2018 and said I could contact her to discuss things with her. She like most on here has become rather an expert on her condition through necessity and indifferent GP attitudes. She has helped me a lot with advice and tips that she says comes mostly from this site. My problem is that I feel ok for a 2 to 3 months when my dose is altered then I start to get all my symptoms back the worst of which is chronic fatigue and severe lower back pain and aching stiff joints and very low mood, not sleeping much etc, etc, etc. This started latter part of 2020. I got where I just put up with it as you don’t know where to turn and my GP practise was taken over last year and all the previous GPs, Receptionists have all left except for the practise nurse. All I all I was in a bit of a state. The surgery contacted me for my annual Thyroid blood test which came back

TSH 0.10 mU/L

Serum Free T4 19.3 pmol/L

I am currently on 125 mg of Levothyroxine.

My GP phoned to discuss my results (which we never got round to in the end - I am no wiser as to what this means) I mentioned I was struggling to function due to the chronic fatigue mostly but that I couldn’t stop bursting into tears. I had never seen this GP but her first words were that some people suffer with Chronic fatigue all their life and you may never find a cause and just need to get on with it. The crying was due to the fact she said from depression (I argued that I had suffered depression in 2007 and this wasn’t the same. She pescribed some antidepressants (which I haven’t taken) and another round of blood tests which came back saying I had high cholesterol of 6.7 mol/L. I have access to my medical record so only know that I have high cholesterol as I read it myself. It said that it was abnormal and that the doctor should speak to me but they never have. I was talking to my daughters friend who asked me to send my results to her and had I had be antibodies checked. I looked back on my record and I had. I gave her the results and she said I had Hashimoto’s. I decided to get some private results through Medichecks. I will post these shortly. They said the same. I have upped my vitamin D and started taking other vitamins like Vitamin K, B complex and magnesium Complex and also upped my dose of Levo to 150 mg per day. I did this myself to see if I would feel any better. I must say I do feel a lot better and phoned the doctor to see if I could up my dose. She said my TSH was very low last time so wasn’t keen. I said that although they (my GP) had never told me, but I had been told I had Hashimoto and this is to be expected. (Is this correct?). She told me she would redo my bloods and take it from there). I had them done yesterday so should have the results in the next couple of days. After reading about Hashimoto’s, I am wondering if the reason I felt ok for a while then plummet is a due to a flare up. My job is exhausting both mentally and physically (I only work in retail but in a very busy environment) I love it though thankfully it is only part time as I could definitely not do anymore as after my 2 days it takes another 3 for me to recover. I wondered why it had all become so exhausting as I have done the job for 15 years and suddenly I am on my knees where as my colleagues who are 10 years older than me suddenly seem to manage much better.

I hope you haven’t all fallen asleep after my long introduction.

My question is. Do you think I need to up my dose or could it have been a flare up and I should just go back to my 125 and see how it goes. I have been taking the 150 for just over a month and feeling ok. I have read that if I am on the right dose of Levothyroxine I shouldn’t be having flare ups so not sure. If I am so busy at work and over exhausting myself, would this still cause flare ups? If you think I should stick to taking 150 mg, how do I argue my case with my GP once I get my results. My last results where middle of November from Medichecks so should give you an idea of where I am at.

[fuchsia-pink]

Welcome to the forum, Cockerpoo

I'd say you need FULL testing - that means TSH, free T4, free T3, thyroid antibodies (if raised that will confirm you have Hashi's) and key nutrients - ferritin, folate, vit D and B12. I've had some success with my GP by saying that these are the tests recommended by Thyroid UK.

You don't give the lab range for your free T4 result (these vary from lab to lab) but it's likely you are towards the top of the free T4 range. So where you sit in the free T3 range is really important - because if this is poor - and you are a classic "poor converter" - it's unlikely that raising levo will do much to help you and your GP will freak out for sure if free T4 goes over-range. Likewise you need your key nutrients optimal to make the most from your levo.

Don't forget always to have an early morning, fasting blood test, 24 hours for your previous dose of levo and generally to take levo just with water on an empty stomach, 2 hours after or 1 hour before other food or drink, and well away from other meds and supplements x

[Cockerpoo]

Hi Fuschia-pink.

I posted my full test results from Medichecks after my first post. I am starting to optimise all my vitamins as per my last post but introducing them one at a time. It is a minefield trying to find out what amounts I need to take if each. I did buy a liquid form of B12 in 2400 mcg but was recommended to try a B complex instead which I have just bought and due to start taking. Not sure which would be best. I will probably take the B complex and then before I buy more use the B12 liquid so not wasted. is there any information available on dosages etc. I am a little wary as I want to make sure I am optimal in these vitamins, I have read that too much of certain vitamins can cause harm so am a little nervous that I don’t overdo these.

[greygoose]

My problem is that I feel ok for a 2 to 3 months when my dose is altered then I start to get all my symptoms back

This is a perfectly natural and normal chain of events. As the body starts using the dose you are on, it finds it actually needs more. So, the symptoms come back because you're ready for your next increase in dose. That's all it means. It doesn't mean that the levo isn't 'working', or that it's not right for you. It just means that you are not on your optimal dose yet.

So, no, I don't think it's due to a Hashi's 'flare'.

A brief run-down of Hashi's:

OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.

Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:

"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.

The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."

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

After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.

There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.

(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)

Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.

There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!

However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.

But, there are things the patient can try for him/herself to help them feel a bit better:

a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.

b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.

c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.

I have read that if I am on the right dose of Levothyroxine I shouldn’t be having flare ups so not sure. If I am so busy at work and over exhausting myself, would this still cause flare ups?

No, that's not necessarily true. As mentioned above, having a suppressed TSH might help limit the swings, but even a suppressed TSH doesn't necessarily mean you're on the right dose.

The sad fact is that nobody really knows what triggers these swings. But, I don't think they have anything to do with over-work. Although, I have to say, the fact that doing your job knocks you out so badly, does point to the fact that you are under-medicated. But, I don't think it would cause a Hashi's 'hyper' swing.

[Cockerpoo in reply to greygoose]

Thank you grey goose. Have I understood correctly that as my symptoms have disappeared since I highered my own dose to 150 at the end of November to see how I would feel and have felt much better since doing so, this is likely to be the correct dose and I should insist on staying on this dose regardless of my TSH being 0.14. The lower the better is where I need to be with Hashi’s.

[greygoose in reply to Cockerpoo]

You have understood correctly. If you feel good on 150, then that is the right dose for you. Things could change - with Hashi's they often do - but for the time being, that is the dose you should be on because it makes you well.

Your doctor shouldn't be dosing by the TSH, anyway. It is utterly wrong whether you have Hashi's or not. It's the FT3 the most important number. And, very often, in order to optimise the FT3, the TSH has to be very low. And that is not a problem.

[MitziMax]

Hi I have the same problem and my thyroid was failing in 2015...but the doctors never mentioned it. I only discovered it in July 2020. Then I was told I was Hyper....!!!!! i do a lot of research and discovered that Vitamin D trials showed it lowered the TSH levels. So the readings are flawed because of the Vitamin D intake. Anyone else know about this

[Cockerpoo]

I have just viewed my blood results from yesterday and they are as follows

FT4 20.0 pmol/L

TSH 0,06 mU/L

VIT D 88.4 nmol/L

B12 349 pg/mL

It says my Thyroid results are abnormal which I presume is the suppressed TSH. Will my GP try and say this is too low and I need to lower my dose when infact this is where it needs to be.

Would it be wise to go back to taking the 5000 dose of Vit D for a while longer. It has gone from 58.9 in mid November to 88.4 yesterday so I think this is still only mid range. I think that is the same for the B12 so need to start taking a supplement for this.

[JAmanda in reply to Cockerpoo]

Can you edit your post to add the ranges? I it's worth getting your T3 tested even if you need to go private so you have the full picture.

[Cockerpoo in reply to JAmanda]

Hi JAmanda

My results from yesterday including ranges are below

FT4 20.0 pmol/L range (11-26)

TSH 0.06 mU/L range (0.27-4.2)

VIT D 88.4 nmol/L range > 50

B12 349 pg/mL range (197-771)

I had my T3 tested in November by medichecks

Results were

FT4 20.200 range (12-22)

TSH 0.14. Range (0.27-4.2)

FT3 4.73. Range (3.1-6.8)

Vit D. 58.9. range (50-175)

B12 -Active 46.800 pmol/L range (>37.5)

Folate -serum 12.63 ug/L range >3.89

Ferritin. 71.70 ug/L. Range (13-150)

The changes I think are expected as I started taking a fairly high dose of vitamin D 5000 for a month then lowered it to 3000, it has gone up slightly but still away to go so will higher it again.

I also highered my dose of Levo from 125 to 150 on my own at the end of November as I had been feeling so poorly again prior to this and my GP had tried to fob me off with antidepressants. I phoned her last week to say what I had done and said I was feeling so much better and could I stay on this dose. She said she wanted to recheck my bloods as my TSH level was too low. After finding out with my Medichecks results and also a friend had already said I had Hashimoto’s as my Peroxidase antibodies were 115 range <34 apparently I need my TSH to be as suppressed as possible as long as my T3 is in range that’s okay. My GP has also done the bone density tests which are all mid range so all ok there.

I think my understanding is correct that I need to tell my GP that has I have Hashimoto’s which is causing the hypothyroidism this needs to be dealt with differently and my TSH is fine being low so the higher dose of Levo is fine as I feel great and it is suppressing my TSH which is needed. (Am I getting this right?). My brain is fuddled at the best of times and trying to decipher and remember any information for any length of time is a fait on its own ☹️I really appreciate all the advice you are all giving.

[tattybogle in reply to Cockerpoo]

Info Re. the 'risks' of low TSH , because, yes , your doctor will almost certainly be unhappy with your TSH, level , and probably want you to reduce dose (even though your fT4 is in range)

If you look at the first reply to this post , (ignore the fact it say's 'more mature')

healthunlocked.com/thyroidu...

and click on the links within it , you will find discussions , and a link to evidence that convinced me that it doesn't really present a problem until TSH is below 0.04 and even then , it's all relative.

[Cockerpoo]

Thank you. Do you know if there Is a way of saving these links or posts that I come across on the site for future reference. I see really interesting info which I want to read later but sometimes can’t find them afterwards.

[tattybogle in reply to Cockerpoo]

At the end of each post , but above the replies , there is a box saying 'save post' Click that.

Then to retrieve your 'saved' posts , find the 'home ' button with a green 'H' which is on the bar next to 'my hub'/'chat'/ 'alerts'

(not the home button next to 'posts'/ 'members'/'about')

Click on that and then look for the box saying 'saved posts ' and click that.

This is how it works on my lap top , if you're on a phone i'm out of my depth as i still use an antique phone