TSH a bit lower - what now?

[meggiemog]

I phoned GP's today for results after test taken for my TSH last week. Receptionist says 'it's normal' I asked the reading - she says 4.13 - What's normal about that? I think anyone over 4 should be offered another test - I've never had my antibodies tested - so I am going to pay to get that done myself. I did a medichecks basic thyroid a few months back - reading then was 3.9 fasting - the 4.13 reading was taken after a normal day at work eating & drinking etc. This was a couple of months after a TSH 4.52 - which was when a GP actually took notice - and now seems to have dismissed me as being OK now. Yeah - right! I sometimes feel like pulling into a layby for a sleep on my way home after work. I can't function like this much longer!

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. 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 all 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

[meggiemog in reply to SlowDragon]

Thanks SlowDragon I did Medichecks with the blood draw last time - so will try them again can't do finger prick test I don't bleed that well from my fingers! I was hoping that the blood results would be at least the same - I have been feeling awful now for at least 2 years if not more.

[SlowDragon Administrator in reply to meggiemog]

Getting tested early and fasting can make the difference between getting diagnosed or not

ncbi.nlm.nih.gov/pmc/articl...

[Ireness in reply to meggiemog]

If your GP won’t give you thyroxine it’s worth seeing a private endocrinologist who will. You only have to go once and they advise your GP to continue with whatever they recommend. I was told I was normal for nearly 15 years when my TSH was between 8 and 9. That range has now changed from 10 down to 5 but I wish I’d known sooner as it’s resulted in damage to my heart. I’m afraid you really have to push for what you want.

[HashiFedUp in reply to Ireness]

OMG poor you. I have no words! X

[Loissy in reply to Ireness]

Hi Ireness - i had the same. My thyroid & Hashimotos went undiagnosed until i was 50. My heart is not good and i take Sogar Hawthorn which helps enormously - it makes the heart muscles function better. I ran out and after 3 weeks i felt tired and breathless. Hawthorn is a good herb for the heart but no doubt the doctors - who said i was fine for all those years - would disagree and want to give me beta blockers...

[Ireness in reply to Loissy]

Thanks ..I’ll try that

[vocalEK in reply to Loissy]

Wow. Medscape is quite positive about Hawthorn. webmd.com/vitamins/ai/ingre...

[Fruitandnutcase]

I hate ‘your results are normal’ - yeah right, maybe normal for her, her dog or the guy sitting next to you in the waiting room. As you are clearly feeling terrible it’s not normal for you.

Definitely worth paying to get ‘proper results that include vitamins, minerals, T3 etc.

[Mumoffour4]

Hey Meggiemog

Just been in a similar situation with TSH of over 5 and told to come back in six months! See if you can get to a different doctor, I was on 50mcg of levo for two and half years; not good! The aim, I’m told, is to suppress your TSH till it’s 1 or under. Also have your ferritin, B12 and folate checked. I was told that at 5.6 my tsh was slightly raised until I saw a doctor who knew what he was talking about!! Definitely worth a second opinion! Good luck to you and hope you get it sorted out!

[Angel_of_the_North in reply to Mumoffour4]

A TSH of 1 is not suppressed; it is extremely "normal".

[Mumoffour4 in reply to Angel_of_the_North]

I think my GP was suggesting that a TSH level of over one wasn’t normal therefore they have to a suppress a TSH level over that, in my case over 5, to get it back to “normal” ie one or below

[Hidden]

Try making a bullet list of your symptoms and how they affect your life, and give it to the doctor. Are you on levothyroxine? If not ask for a clinical trial. If you are, what dose?

Assuming there are several GPs in the practice, another thing you could try is ask the receptionist for advice about the best doctor to see for your problem. You could explain (don't complain, unless you REALLY have to) that although your levels are within "Normal" range you still feel very unwell and need to see someone who can help you.

[meggiemog in reply to Hidden]

I already have given a list to the GPs , but the GP I saw at the time seemed to kind off brush me off like I was a hypochondriac. I feel like they see me as a waste of their time. The GP I am seeing now is much more helpful, but at the same time their hands are tied to NHS budgets and guidelines. It also seems that the area you live in dictates how you are treated or not as the case may be. Most guidelines however state that a TSH of 4 or above should be retested - so why say 'normal' result?

[Hidden]

I still felt unwell when my TSH got to just below 3 and had to really "Fight" to get another increase of Levo. I still have some hypo symptoms, but at last have found one of the GPs (the receptionist said, without my asking "He's very good"),who seems to understand and be willing to work with me to feel as well as possible. Which in my case seems to be top of range thyroid hormones and suppressed TSH

[Greekchick in reply to Hidden]

Hi Jnetti,

I agree with you about the office staff/receptionists - they are front line and know what is what. They are often ignored and treated as if they do not exist. I have found for myself that cultivating these individuals has paid huge dividends for me. Nurses can be helpful as well - but not necessarily as forthcoming as those who do not work directly with the docs. Just my two cents for what they are worth. Have a good night!

[estrellaliliana]

LOL the receptionist? For important things lk that I don't listen to a receptionist. Maybe a nurse. And no, actually you should demand a copy of your results.

Pay attention to how you feel. Your symptoms are a better guide than the TSH

[Hidden in reply to estrellaliliana]

"For important things lk that I don't listen to a receptionist"

Which sort of illustrates what Greekchick said above, that "they are front line and know what is what. They are often ignored and treated as if they do not exist."

Receptionists are of course not allowed to give medical advice, although they would likely have picked up quite a bit after doing the job for a while. But they know what's what in the practice where they work, and who is the best doctor or nurse to see.

Which is often as important as the medical advice - possibly more so if you are trying to get the proper thyroid treatment.

[estrellaliliana in reply to Hidden]

We're talking about that the receptionist said "it's normal", did you read it above? No receptionist has to utter a conclusion like that if that it's what happened.

[meggiemog in reply to estrellaliliana]

Unfortunately that is the note the GP wrote on my result - so she is only quoting what she is told. I dont know which GP saw it though as I think the one I have been seeing is on is on holiday and I have made a phone appointment for when he is back to discuss.

[Lrm7]

Here’s me with my TSH of 34.3, praying for the day I’m down to single digits, only to see you still suffering 😞 makes me feel disheartened to know regardless of our levels, we are still possibly going to suffer from symptoms.

[NWA6 in reply to Lrm7]

That’s because the TSH test is flawed! Please don’t feel disheartened. All you need is FT4/3 testing and to get those to your optimal level. All TSH testing does is show that there’s a problem. My TSH was 0.03 and I was still very unwell. I personally needed T3 added to my T4, that’s only rarely necessary, mostly people are just not given enough medication and/or their vitamin and minerals are depleted.

[Lrm7 in reply to NWA6]

Thanks Paula6, is that something I should be asking about when returning for my bloods in a few weeks? I had always thought once I get my TSH within this optimal results that I would just automatically feel like me again, feel well and be able to function properly again. Being on here and reading other people’s issues had made me realise that’s definetly not the case 😞.

[NWA6 in reply to Lrm7]

Lrm7 full thyriod testing is the only way we know how our medication is working (apart from symptoms).

The NHS system often only allows for TSH testing and as yours is so high at this stage it would help indicate if your going in the right direction so if it’s all you can get atm then don’t panic it’ll serve its purpose but let’s just say you get your TSH down to within range (usually something like 0.45-5) and you still don’t feel well (and assuming that you have had vitamins tested and those are all optimal aswell) then you should ask for full testing and if that is refused then get private testing. This will then allow you to see if you need more Levo or what your conversion or absorption is like.

I see from your first post that you didn’t get on too well with Levo when it was initiated and did much better on NDT. Getting FT4/3 testing done on NDT is crucial because it has both T4 and T3.

Please don’t feel alone. Start a new post everyday to ask questions. If you don’t know what questions to ask keep reading everything you can on line, on this forum. It’s a slow learning curve sometimes but you WILL find your answers but unfortunately you have to educated yourself, don’t expect anyone else to find the answers, particularly not the NHS staff, they have very limited knowledge esp if you are one of the rare people who can’t tolerate Levo. But there are answers.There is treatment but you’ve got to find.

[meggiemog in reply to Lrm7]

Bless you - I feel cack where I am looming in the 4's and you are nearly 10x that! I think I'd be dead at that level. To be fair I have not had antibodies checked - so that's the next step for me - and I know I will have to pay for that blood test as NHS here will only take notice at TSH 4.5 I have had so many things going on lately - but my 2 biggest worries are my hearing and heart health. I have lost hearing very significantly on one side - which could be autoimmune linked - which potentially means my other ear could be affected in time. That's something I can't risk. Most days I have something going on - be it sore throat, headaches, muscle aches - I could go on .... but my hearing is actually damaged now on my right side - I can't understand speech in that ear even with a hearing aid. I do have strange 'attacks' sometimes when I feel like I am shutting down - I go so cold I am under a duvet with all my clothes on and a hot water bottle and I am still shivering with cold. I eventually end fall asleep - but wake up with a bad head and usually end up being sick before I feel better. That really scares me too.

[Lrm7 in reply to meggiemog]

It’s all invisible though, all the symptoms aren’t outwardly obvious to others which makes it really hard to have people understand just how hard things are on a daily basis, do you feel like that? People who don’t suffer from it, don’t understand the impact of it. Iv long since given up trying to explain why I don’t have lunch at work and have to go sleep in my car for 50 minutes just to make it through the day. I feel everyone on here is so knowledgeable, where as I am entirely completely lost. I am on the 50mg of levo now and it’s just a waiting game. I think it’s impossible to feel any worse than I do just now so I’ll just go with it and hope to see some improvements over the coming months. I hope you find the strength to keep going, gets the answers you need and find ‘’a normal’’ whatever that even means anymore!

[meggiemog in reply to Lrm7]

I absolutely feel like no one at work truly understands - I sometimes have to get up and go to the toilet even though I don't need it - Just so I don't fall asleep at my desk. I find myself trying to send e-mails I have already done because I forget I have just done them. Weekends I feel so much better as I know I can sleep when I need to - but I feel guilty that I have no energy . My husband is the one who does most of the housework at the moment. He's a star!