My GP is convinced I am overtreated with levothyroxine. See results to prove otherwise. We had a really frustrating conversation today and she made me doubt my conviction around trying to suppress my TSH. Can someone give me an idea of how much it costs to see a private endo in the South West, who will help me to get my levels optimised? Do you think a little bit of T3 would help? I'm already on 175mg of Levo. Seems a lot.
Unhelpful trip to GP today: My GP is convinced I... - Thyroid UK
Unhelpful trip to GP today
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Auntbessy
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👋 There is a list of Thyroid UK approved practitioners, I am sure someone more helpful than me can provide it.
I am confused how your GP could argue with you over these results… your TSH is not suppressed by their own standards. Are you asking for an increase? If not, I can’t see how these results would be a problem even for the most ignorant GP.
Adding T3 would probably only be worth considering if you raised your T4 and still felt unwell, you’re only 50% of the way through the T4 range and your conversion isn’t horrible considering what low T4 you’re living on. You could be one of the lucky ones who only needs T4, but sounds like you’d need a more open-minded doctor to let you explore that possibility.
Auntbessy in reply to
Thanks for your support 😊 I need to change me GP. She thinks I .a hypochondriac and that is never helpful when you sense that. I think she seems to think that it's weird that I do my own reading and that it's a sign of terrible anxiety. She at least said that she will consult an endo. I didn't think I could increase my Levo anymore, as I am already very close to the minimum TSH.
in reply to Auntbessy
Yes she does sound dreadful… these GPs we must suffer have no apparent understanding of how to treat thyroid disease effectively. Sadly they are much more interested in lab ranges and numbers on their screen than the patient and their presenting symptoms. I don’t suppose that, even if you did have “hypochondria,” it would occur to her that anxiety can be a symptom of being undermedicated 🙄 needless to say I don’t think it sounds like you have hypochondria at all, sounds like you rightly sense you are undermedicated. It might help to throw some NICE guidelines at her. Hope the endo has some more sense than her and you can make some progress. Keep trusting your gut 🙂 it sounds right on to me!
we get this from our GPs all the time..they miss the point that you are going back to them because you are not being treated correctly..not because you are a hypochondriac..and yes, they constantly play the anxiety card. I am not trivialising anxiety, but they are using this label as a way of gas lighting and saying it is all in your head
in reply to Auntbessy
Auntbessy , agree with helsyf that your dr is gaslighting you.
"Weird that" you "do your own reading"??? -To not want to be kept in ignorance seems very normal to me.
What century does that dr think we're in?
I didn't think I could increase my Levo anymore, as I am already very close to the minimum TSH.
There is no minimum TSH. What has she been telling you? TSH can go to zero and beyond but your thyroid hormone levels still be too low to make you well. In which case, you need an increase in dose despite the TSH. Dosing should never be done by the TSH alone. The most important number is the FT3 and yours is well below mid-range. And your FT4 is only just slightly over mid-range. So, there's plenty of room for an increase. 
Really? I didn't know this! I think I need to see a proper endocrinologist.
Be prepared that even specialist endo can make you doubt yourself. Mine when I asked about a 24 hour urine to test for T3 and T4 as well as ratio, said he had never heard of it. He was an 'International Expert' you know. Possibly in Primary Hypothyroidism but not in Cellular/Secondary Hypothroidism which according to him did not exist.
If such a thing exists! They are 99.9% diabetes specialist, with little knowledge of thyroid. So, you'd have to chose your endo very, very carefully if you don't want to make things worse.
Grey goose how do I know what information to trust if endos aren't that much help. Where can I find the most up to date and evidence based information?
On this forum, in my experience.
In 24 years of dealing with my Hashi's, no endo nor doctor (apart from Dr Peatfield) has ever provided me with info I could trust, nor helped me with my hypothyroidism.
Thankgoodness this wonderful forum with so many knowledgeable members exists!
Totally agree with grumpyold , on this forum. It's the best forum I've ever come across, and I've been on quite a few!
I've also seen a lot of endos! And I wouldn't give you tuppence for any one of them!
By the way, I didn't reply to this two days ago because you didn't click on the reply button under my comment, nor did you highlight my name to tag me, as I did with grumpyold, so I wasn't notified.
Hello Auntbessy :
Your TSH, T3 and T4 are in the range and you need a dose increase in T4 :
We generally feel best when the T4 is up in the top quadrant of its range at around 85% as this should then give you a T3 tracking behind at around 65-70 % through it's range.
Currently your T4 is sitting at 54% with your T3 is sitting at around 25%.:
The conversion ratio when on T4 only medication is said to be 1 - 3.50 - 4.50 -T3/T4 with most of us feeling at our best when we come in this range at 4 or under -
So to find how well you are converting the T4 into T3 - simply divide your T3 into your T4 - and I'm getting 4.24 - so slightly wide of centre - but this should improve as you build up your T4 into the top quadrant of the range.
No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels -
I now aim for ferritin at around 100 : folate around 20 : active B12 75 ++ ( serum B12 500 ++ ) and vitamin D at around 100:
If you are feeling well, I don't see a need to change anything. Everything is in range, so I don't know why the GP is complaining???
It's because of my symptoms which I think are perimenopausal and she says are because I am overmedicated. I also have high prolactin levels which she attributes to being overmedicated.
I have no idea of pre-menopausal symptoms and prolactin levels etc. Generally, T4 over-medication symptoms for me are nervousness, anxiety, feeling hot, increased appetite and looser motions. From what I understand, feeling hot and increased appetite are the most representative, but then I may be wrong and other members may be more knowledgeable. Good luck.
Raised prolactin is associated with too little thyroid hormone not too much!. I overproduced milk when I was undiagnosed Hashi’s and breastfeeding. Sounds like your doctor knows nothing! uspharmacist.com/article/su....
TSH and prolactin tend to go hand in hand with each other.
It is well-known that TSH release is pulsatile - little blips through the day. Prolactin release is even in step with that!
You are NOT over medicated! Is your GP a dummy? Can’t she read and interpret results? What on earth is she on about ? Get someone else fast who is numerate and has a brain. I’d agree you still have lots of room for a dose increase. Mine aimed for TSH 0.2-0.5 and the free T3 & 4 in top third of range (as of Dr Toft, an eminent endocrinologist ) and you are still miles off that. Don’t take any more nonsense from her. I assume she thinks anything under 1 for TSH is suppressed which is complete trollop it must be out of range at the bottom end 🙄 it beggars belief she’s spouting such nonsense instead of trying to get you optimised and symptom free. You will never be well with her doctoring you she’ll just make you more poorly.
All of the doctors I have seen are totally incompetent and completely devoid of any effective knowledge regarding Thyroid Disorders and their treatments. I went private and saw [ name edited ] who was utterly brilliant and trebled my Levothyroxine dose immediately (I’d been grossly under medicated up to that point and my doctors refused to increase my Levothyroxine dose) and she told me I was Perimenopausal (my doctors told me I couldn’t be because I’m too young - I’m 50 🤔). I have lost all faith in my doctors surgery and will see [name edited] from now on. She was worth every penny of my own money to see an expert.
Ps…the first appointment was £250 for half an hour and all subsequent appointments will be £180.
That is not as expensive as I thought it might be. Is she an endocrinologist? Does she help you with your perimenopause as well e.g. prescribes HRT?
Sorry just saw that she is a an endo. Does she explain the science behind everything properly? I want to be taken seriously, but I also don't want to get what I want just because I would be paying.
To be honest, I already have quite extensive knowledge and she was saying all the right things. Half an hour is not a long time and you will be surprised how quickly it goes - so you need to get to the root of what you want pretty quickly. She is bound by a code of ethics, so wouldn’t give you want you want just because you are paying for it. She will give you what you need.
Hi Auntbessy
If you want to understand your condition- you are going to have to read up yourself. Then and only then will you be able to have a meaningful discussion with doctors, sort out the ‘dumb-dumbs’ from the ‘know some’ etc. Otherwise all that will happen is you will go from doctor to doctor, wasting your time and potentially letting your condition deteriorate as you do as they say😱. Oh my goodness, I have seen too many of those stories and would have been one myself were it not for this forum.
I have made a bio that reads as a case study- quite a few of us have this is useful for everyone and we update as required. Personally I have also made several posts on the misconceptions most doctors have on the management of hypothyroidism.
If you have a gander at my profile - click on my face to get to it.
But I need to emphasise- first last and always SYMPTOMS are the most important guide to treatment and any test should be calibrated to the patient not the patient to the test, otherwise doctors fall into the oh so common trap of treating the lab work, not the patient.
I’m a bit scarce online at present, we have just sold up and are ‘sofa surfing’ around the country while we find somewhere to land. I will try to check in once or twice a week as opportunities arise. Good luck and dig deep and greygoose is utterly on point. It truly is a terrible state of affairs.
Also if you see an endo privately and then via the NHS, the script may change. I fancy they do not have as much latitude. The GMC have a history of hounding those few brave souls who treat the patient and not the lab work! 😱. Yes really- I’ve started reading Sarah Myhill and she was being hounded constantly. Dr Peatfield likewise.
Auntbessy,
TSH is fine considering the dose of thyroxine you are taking. However, FT4 labs aren’t reflective of your 175mcg Levo dose at only 54% through range.
I wouldn’t raise Levo higher as you are already on a good dose and there’s a distinct sweet spot for most but would look at why the levels remain low. Are you taking Levo on an empty stomach? Are you eating well to provide the necessary protein transporters to allow the ‘frees’ as opposed to meds remaining as unavailable ‘totals’.
You have high prolactin. What about unopposed high oestrogen (peri-menopausal?) Are iron and nutrients optimised? If you have Hashi, is damaging autoimmune inflammation being well managed?
FT3 is only 27% through range but most likely because Levo isn’t being utilised correctly.
And more importantly how are you feeling?
Hi radd, I take my Levo in the middle of the night around 2am and on an empty stomach. I have a good diet, yes. Gluten free almost completely dairy free and with lots of fruit and veggies. I don't think my iron and b12 are very high but still in range, but testing that soon. Just waiting for the test to arrive on the post. I believe I have low progesterone which means I have a very short cycle, depressive moods, numb hands, tire easily, have no sex drive, sexual dysfunction plus no moisture. Generally I suffer with muscle cramps and one-sided headaches which come on my themselves. The cramps can stop me sleeping as they lead to tension and pain. I have chronic tinnitus. Aside from all of this I am not on the floor and manage OK energy wise throughout the day.
Auntbessy,
Just reread your previous post as only picked up on the elevated prolactin near the end of the discussion. You also have very elevated testosterone (bound and unbound) and SHBG (binding transporter) within range. Testosterone is also bound to albumin (and little to other) but to my untrained eye this still indicates a large amount of free testosterone which would be undoubtedly contributing to your symptoms.
Yes, progesterone does look lower end of range but oestrogen isn't that high. You could try an OTC progesterone cream but given you have so many symptoms and the hormonal flux will intensify as you transition through peri to eventual menopause, I would recommend seeing a special.
I suffered elevated testosterone too but thankfully addressed before the hairy bum and deep voice appeared 😁
I already have the hairy bum! Surely high testosterone would equal a good sex drive through? Thank you for considering my situation 🙏 Tufty73 suggested an endo who addresses sex hormones too by the looks of it. Did you go private to address your issues?
Auntbessy,
'I already have the hairy bum!'
🤣 Better move quick then!
When I had elevated testosterone my O & P were low and sex drive was low until O & P were raised through use of HRT. Also need thyroid hormones working for good sex drive as its a combo effect.
Yes, you will likely need to go private as GP's don't have the knowledge to deal with all this. I would leave Levo dose as it is, eg don't increase or reduce. Explain to your GP you have been on this dose for four years and changing now risks muddying the waters for a private endos future assessment.
Hi there,
Everyone should get a £1 for every time a GP says ‘oh you’re suffering with anxiety’! We would all be rich 🤣. It’s a lazy get out clause and even if we were they do not recognise cause..it’s just the patient 🙄.
If you go private, just to make you aware that the majority are NHS Dr’s part working private too, but tend to give you more time, but still tend to work on same NHS protocols ie largely blood results and wide range hormone blood results.
Good luck x
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