Hi all - as always thanks in advance for any help or advice you might be able to give me.
From the looks of my Medichecks results it appears I have Hashimoto's after having been growing progressively more ill for almost 2 years.
I will be speaking with my GP next week - the appointment originally made as I wanted to ask if it was possible to push forward an ENT specialist appointment that I have now been waiting for since October and have been told will be another 9 month wait. (I had to wait 4 weeks just to get a GP appointment.)
Obviously I will now be discussing the Medichecks results with him but I am dreading it. For a long time I have been convinced this mystery illness was a thyroid condition but he always poo-pooed all my suggestions saying the thyroid tests he had done were showing me as normal. I asked about some deeper tests I had heard about vaguely that might show something the normal tests wouldn't but those were likewise dismissed as not necessary.
What is the best approach to take and what have others experienced at the point I am now at? Do doctors get annoyed that we have effectively bypassed them for our blood tests and to get diagnoses? Do they recognise Medichecks results? What do I do if he poo-ppos me again?
Sorry to seem like such a wet thing. My brain barely functions these days, I am so emotional all the time and I am also still reeling a little from the blood test results and the implications.
Any sharing or thoughts from those who have been there before me would be much appreciated.
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PurpleNel
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That instantly alarms me. My TSH is only just over 5 so there is so little margin there. And if this can fluctuate throughout the day it could easily go below 5....right? I thought I was finally going to be a step closer to getting my health back after having had a 'mystery' condition for so long and right now what feels like a very low quality of life - I am barely hanging on in there., mentally and physically.
I know I am getting ahead of myself and being very negative (not sure who this person is - I used to be so positive about everything) but this news has stumped me a little.
Point out the over-range TSH result AND high antibodies. Make a list of your hypo symptoms. Write down bullet points of things you want to say. And ideally take a MAN with you, to emphasise how you're not properly "you" [for some strange reason, although it's not the 19th century any more, we get taken a LOT more seriously with a bit of Y chromosome in the room]. If you don't have a tame bloke at home or that you can borrow, an adult female would still be useful - it's always helpful to have someone who isn't you there, pleading your case, or remembering things you forget
And make sure it's someone that's on your side! My ex agreed with the doctor that I was just a hysterical female and they both sat there having a good laugh at my expense!!!
You could always send a letter in advance of your appointment, enclosing your Medichecks results and including the article from Dr Toft that I referred to in my reply to your previous post. Did you send for it from Dionne at ThyroidUK like I suggested? Highlight question 2 as I have suggested previously.
When you have your telephone appointment you can ask the GP if he has read through your letter, results and the article, pointing out the part of the article I underlined for you.
Hi Seaside Susie - I have looked back over my previous posts but I can't locate the one referring to Dr Toft and Dionne at ThyroidUK. I know this is me - I am struggling so much to sort through all this information and I am just not taking things in. I don't want you to think you are wasting your time replying to me or I am just not bothering to read things properly. I feel like my brain is moving through treacle and just not processing all of this, especially after I have finished my day's work which I am also doing at snails' pace (but at least I am still doing it). If it isn't too much trouble could you send me the link again please? I think your suggestion about writing to the doctor with all the results and info in advance is a good one. And apologies again for being inept and overwhelmed at the moment.
What you can realistically expect from a GP at this point .... The NHS guidelines do accept that raised TPO ab (thyroid peroxidase antibodies) indicate a greater chance that the person will go on to eventually become overtly hypothyroid (TSH over -range, with fT4 under-range) . so, since yours are significantly raised, this result will be helpful for GP conversation.
But it won't make then start treatment yet.
Your current results will be classed as 'sub-clinical' hypothyroidism.(TSH over range, but fT4 within range).. which they wouldn't treat unless it has symptom's of hypothyroidism.
They also have to make sure that it is not a temporary raise in TSH that would be self resolving.. as putting someone on Levo for life would be a mistake if not needed, they would be better off waiting to see if it resolves as once on Levo it's not obvious if it has resolved.
So, for the above reason, NHS guidelines for starting treatment for 'sub-clinical hypo' say;
" 2 x over-range TSH results... 3 months apart, plus symptoms of hypothyroidism"
Currently they will probably say "5 is not much over range at all .. and look, your fT4 and fT3 are really good, so go away ,and stop reading the internet "
Don't be too upset if this is the response you get at this stage .. you know you've done decent research , and have long term symptoms that fit . but they don't know what you've been reading or who you've been talking to ..and they must get inundated with people demanding xyz because they read it online.
So keep faith in your own opinions , even if their initial response is " wait 3 months , those symptoms could be because of lot's of thing's that are not thyroid related, would you like to try some antidepressants ?"..... it's so hard to hear that ,when you've been struggling for years.. and it makes you feel like they don't believe you .. but follow the process to give them the blood results they need to see before they start treating you.. it's there for a good reason.
p.s your fT4 / 3 do look fine at the moment, but when the thyroid starts to struggle the TSH rise is pushing it hard to make extra T3 in order to keep you functioning .. but eventually it can't manage anymore, which is when T4 goes under range..
WE understand this.... it is due to the action of the deiodinase's, which remove an iodine atom from T4 to make T3, but GP's will probably have no idea what a deiodinase is, or that a thyroid under attack from the immune system can occasionally release higher amounts of T4/3 all in one go as that bit of it dies.
They will probably have no idea that most healthy people have TSH around 1 , so if they just look at the TSH range , 5 doesn't look bad yet,, but WE know it is a clear indication of a problem.
They may also find it hard believe symptoms could be bad enough to impact your life as much as they are, with TSH at that level .. they may have met some patient's with TSH >10 who didn't have any symptoms at all. But don't let this make you doubt yourself , the level of symptoms is not a test of character or strength.. it's just how it is .. our bodies are all different. I was in real difficulty and had been for 4/5 years with TSH at just 5.7/6.8... with T4 still in range., and there was no doubt about it being a thyroid problem .. after dismissing symptoms for about 6 months as ' probably something else' they eventually found TPOab of 2499 and said 'oh i see , have some Levo '
They will probably pull a funny face if you use the term "Hashimoto's" .. they are more used to referring to it as 'Autoimmune hypothyroidism' and there is so much rubbish on the internet about hashi's.. so it may not help the conversation if you call it Hashimoto's.
* Important ..... When you do your NHS TSH test , remember... TSH fall's throughout the day to it's lowest around 1pm ish , so to get the highest level you will get, test should be as early as you can get it, first thing in AM, preferably without breakfast or coffee.
I usually say "i can't get to a test after 9am due to work...." it's better to wait even a few weeks if needed for a blood draw early AM than to risk getting a lower (just in range)TSH result.
GP's don't seem to know TSH had a diurnal rhythm, but for some people i think the difference can occasionally be as much as 40% between highest and lowest...and even if you're not one of them , every little helps.
I don't have a male I can take with me - on my side or otherwise (poor Grey Goose!) My sister has been helping me all along with the doctor but I can't ask her right now as she has some horrible personal stuff to deal with. I will try and digest all of this - thanks everyone - but only seem to be taking in a fraction of it and a lot of it my foggy brain can't process at all. I didn't even know what hashimoto's was until a few days ago and I keep reading and reading all these replies and it still won't go in.
My private only Endocrinologist explained to me that a TSH above 2.5 is hypothyroidism. The NHS ranges are set too wide. If your TSH is above 2.5 then you have hypothyroidism. In Germany they give you treatment above 3.0 here in the U.K. they make you wait and suffer. I was only offered treatment when my TSH got to 36! They just kept saying I was suffering from depression.. clearly not. Insist you have at least a trial on thyroxine medication.
Thank you so much. These damn numbers...all I know is that I feel really ill ALL the time.Felt so low yesterday. Stupidly thought that after my Medichecks results it would all be simple and all be over soon. That is very clearly not how it works. Who knows how much more if this hell I have in front of me
Re the private endo person. Is that very expensive in the UK and would you recommend it?
Wow - really?! I could manage that. How did you go about finding him/her? I did a quick search after you wrote to me but it looks like a minefield (although just thinking feels like a minefield at the moment!)
I have an initial consultation with a private Endo on Friday so I don't know what my total costs will be but he charges £150 for the first consult and £100 thereafter.
I had no idea it was this affordable (mind you, I had no idea what an endo even was until a few days ago - it is a sharp learning curve here). Why did you choose to go down this route? Were you getting nowhere with NHS system? How did you find this endo?
Chose to go private because I've had to argue my case for a T4 increase every time. I just don't have the fight in me to get a GP referral to an NHS endo... Plus the wait time is almost a year at the moment. Plus, my CCG don't prescribe T3 so if I need it, which I think I do, the only way to get it and be monitored is via a private prescription.
I found him by getting the 'approved' list from Thyroid UK and asking for opinions on here!
Absolutely - This forum can provide so much support on your journey. It's been a huge relief to know it is here!
Personally, with your results, I'd be going private. GP's won't treat you until your TSH is near to 10. ( I had to wait until mine got to 8.9 and had high antibodies.)
Don't do any cliff jumping just yet. The end of the road is further away than you think.
I hope that last sentence has a typo in it! I think if I had to wait until it was nearer 10 I'd feel dead if how I already feel is anything to go by. In my heart I know I am not a wimp and have endured some horrible physical problems in my time and always bounced back determined and stronger but I often DO feel like I am a wimp with this. When I read on here how long some people suffered, without help, it makes my 2 years look like a walk in the park.
Waiting waiting waiting is a horrible thing - I have already been waiting 9 months to see an ENT specialist and have been told it will be another 9 months. (and that is a second referral as the first one said my barium swallow had shown nothing wrong so what did I expect him to do - you have ME - that is the cause) I am considered routine despite the fact that whatever this lump is in my throat now makes it impossible to sleep lying down and I wake up coughing if I do. Even a slight touch on my throat makes me gag.
If it wasn't for this forum I think I would have broken.
I waited a mere 5 years for a diagnosis! If I had known then what I know now I'd have gone private years ago and saved the heartache.
We have all been at breaking point; that is how we found our way here. We have all been gaslighted by the medics telling us there is nothing wrong because they're only looking at the bloods and don't give a fig about symptoms.
The 'not until it's over 10' thing is only really meant to be for people without symptoms. (although some doctor's may misinterpret that intention). For people who do have symptoms and have TSH 'over range but under 10' there is clear NHS guideline saying GP's 'may offer a trail of Levo to see if getting TSH into range resolves symptoms'. And having over range TPOab makes it more likely they would offer this. So don't assume you will have to wait till it's near 10 on NHS. There are people on here who were treated with TSH lower than that .. I was 5.7 ,then 6 weeks later 6.8 . so they checked TPOab and they were 2499 ,and i got levo. (I had been into doctors about once a month for the previous 6 months though, saying "something's wrong" and being offered antidepressants !)
That is reassuring. It really does seem to come down to individual doctors so I will have my phone appt with GP next week as scheduled and take it from there.
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