Help with test results please raised tsh ?

[Mst27]

My latest blood tests have shown my tsh to be above range and it has increased each time. My t4 is within range and I managed to get t3 in the last test also in range. Could someone please explain why this would be please. I am still on my original dose of 25mg of levothyroxin. I haven’t felt unwell recently but I haven’t felt completely well either if that makes sense ! Any information or advice would be appreciated.

[tattybogle]

are these tests done by GP ? as expected these show 25mcg levo is not enough, and your (tiny) dose needs increasing,

It needed increasing a month ago ,when TSH was over 3 , but it seems that wasn't done .. however the fact that your TSH has now risen to over 8 should show GP your dose definitely needs increasing straight away.

They should increase it to 50mcg and then retest after 6 weeks.

[tattybogle in reply to tattybogle]

ps. don't let the apparently 'good' fT3 result confuse you .. it is only that high because the very high TSH is creating more T3 than usual in a desperate attempt to try and keep your body going. despite you thyroid struggling to make enough T4 , and the doctor not giving you enough T4 from Levo to make up for it . The usual dose to start off is 50mcg unless there are heart concerns ,when a 25mcg starting dose might be used to avoid putting a strain on the heart , but even then it still needs increasing to a proper dose as soon as possible. they are not supposed to leave you on just 25mcg .

[Mst27 in reply to tattybogle]

Thank you these results were from my gp. I will try to get an appointment to up my dose to 50mg as soon as I can. I had my six week review cancelled by the gp in December and when I said it was important for the gp to review my medication I got a call back from the receptionist to say he said all was fine and I could be left for another six months that was with my previous test results. I had these recent tests done because of palpitations in November but my results were lost and they asked me to have the test again. I was concerned when he said I could have a review in six months but did not have an opportunity to discuss it with him at the time. Thank you for your help. I get confused with what the results mean and sometimes I feel like I understand and then I realise I don’t !

[tattybogle in reply to Mst27]

Hi , there should not be any need to wait for an appointment because an appointment isn't really needed ... the GP just needs to look at these recent results and should issue a new prescription for 50mcg once they see TSH is so high . This can all be done over phone. he doesn't even need to talk to you (although obviously it would be nice if he did ) So push them to sort it out quickly .

[Mst27 in reply to tattybogle]

Thank you I have used the e consult service before at my doctors so will try that as opposed to getting an appointment which could be in 3 weeks. Thanks again for your help.

[Charlie-Farley]

MST27

Tatty is right you need more levo

I was under medicated for 6 months by an idiot GP who did not know what they were doing. I think they thought they were ‘topping me up’. Read my profile- it will Leave You in no doubt that you need to take charge of your own health.

25 µg of levothyroxine is the starter dose for a child or a person over 60 with a heart condition.

Do you come into either of these categories? I doubt it…50 µg is the normal starter dose.

Current NHS guidelines are to aim for a full replacement dose calculated as 1.6 µg of levothyroxine per kilogram of body weight.

This is a guide only, but does give you something to work with. I calculated 142 µg and rounded up to 150 µg - fought for dose increases to this and now feeling well.

They tried to stop me having a dose increase at every stage because I was in range. I spoke to various GPs only one had a clue. I had to explain a few things to him, but he was at least receptive. Most are not up-to-date with guidelines. It is a shocking state of affairs, so you really do have to get up to speed with your own health issues.

BTW I had a GP tell me I was ‘normal’ on 75ug of Levothyroxine (even though I felt like poo) having never set eyes on me before. She couldn’t get her head round the fact I was ‘in range’ and still had symptoms.

I have a friend who is on 75ug and doing really well she is 4’11”” and 6 1/2 stone 🧚‍♀️

I’m 5’8” and 15 stone 🐘 (and now on 150ug) 😂🤣😱

TSH

Yours is high at the moment but it may drop as you get to replacement dose. as Tatty has explained, the reason you may have normal levels of FT3 and FT4 in your blood at present is the fact that your pituitary is chemically “flogging” your failing thyroid with TSH (thyroid stimulating hormone).

Most badly trained GPs and Endos are obsessed with TSH because they don’t know any better. Don’t presume they know more than you and if they are putting TSH above how you feel then I certainly would say they don’t know more tan you.

Your GP should be getting you in full replacement dose. You will need to be touched blood tested and increases given every 6 to 8 weeks until you are on high dose that makes YOU FEEL WELL .This may end up being below or above the guidelines- but I cannot emphasise this enough, your symptoms are the most important thing - you have to feel well, irrespective of where you sit in the range on blood tests, or whether you are even above the range.

When you get to a sweet spot Do Not Let the doctor ‘prat about’ with your medication just because he wants to get everything in range it’s how you feel that is most important. They will just make you ill if they do this. You do have a say in your own treatment don’t forget this.

Look at SlowDragon’s advice, she posts regularly about how vitamins being out of kilter can play havoc with your metabolism. To get the most out of what ever dose of levothyroxine you are on you need to get your metabolism to work optimally.

If the doctors keep mucking about with your dosing this can also make it difficult to get back to the sweet spot. Lots of anecdotal information in people’s posts at having had this done to them and being unable to get back to the sweet spot or very difficult to get there.

Stick to one brand if Levothyroxine that suits you. Brands are like biscuits and people have very different reactions to them.

I’m on just Teva which is lactose free. Many people do not get on with Teva.

Things that can effect you when on medication - not necessarily meaning you need to alter dose - just be aware.

Weight and/or general health - changes in diet activity.

You can also have an illness that will knock you off and it can take longer to get back to the sweet spot.

Medication additions for another issue can have profound effects and don’t presume a GP or endo will be cognisant of this.

Also brand changes of Levothyroxine can affect you. I’m on just Teva. A lot of people do not get on with Teva, but I’m lucky, I do and it means that I’ve got a lacto free version of Levothyroxine. If the pharmacy jump about giving you any old brand that they’ve got in at the time this could have an effect on your health as well. If it’s not something you’ve noticed you might have to go and consult with your local pharmacy to find out all the brands that they have been giving you if one hasn’t been assigned.

I’m lucky our local surgery has a meds management team who are great and I can talk to them directly and I do get sense from them more so than the GPs actually as a whole. With a simple explanation that I was avoiding lactose and apparently it’s a good idea to be on the same brand all the time anyway, the meds management team put on my notes that Teva was the required brand. Also doubled up by asking the Pharmacy to put the same note on my records there.

I have had to check a few times and give meds back because the pharmacist has not read the information properly but I think we’ve got over that hump now. I have had to wait a day or so whilst they correct the error but I have never given in on just taking whatever is in the bag and I would advise you to do the same.

Reduce the variables then if you have any problems, it’s easier to see what the cause is.

In science when we are conducting experiments we change one variable at a time to determine the effect. I see no reason to treat myself any differently. I have an environmental science background but there are some overarching principles that can be applied to every aspect of science, medical included. Looking at one variable at a time is one of those principles.

Feeling well or good on paper?

There is also the consideration of weighing up what you want. Do you want your bloods to be measured against a range that does not bring you to good health, but looks good on paper, or do you actually want to feel well? The many Endos and most GPs will want it to look good on paper.

I need to do another blood test and I’m pretty sure it will show that my TSH is suppressed, but I do not care because I feel great. I will not trade how I feel now to how I felt when all my bloods were within range and I felt damned awful and wanted to die.

Finally, keep meticulous records get printouts of your results do not be fobbed off with you’ve got patient access.

These records are quite often incomplete with no detail and some of my results have strangely disappeared thankfully because I had the presence of mind to take screenshots of my patient access I can see where things have gone missing and I also have printouts of all my blood tests my records are complete even if patient access is not.

I read a book at the start of my journey it’s called “Be your own thyroid advocate.” (when you’re sick and tired of being sick and tired). It really helped me to get to grips with things - took a while to read because it was a new subject but it is good. But reading round this forum has been a valuable source of advice info and scientific papers.

I’m here thanks to this forum….

[Mst27]

Thank you for taking the time to write such a detailed reply I really appreciate all the help and advice I have been given on this site. I will be getting on to my gp on Monday and I’m hoping he will listen he has in the past been good 🤞