Another they dont listen ...

[mrskiki]

Well after 9 weeks on 100mcg levo back in Aug, my TSH finally came down to 4.27 (0.27-4.2). I asked for Increase to 125mcg, asked again etc, asked for compromise at 12.5 due to my symptoms. Refused. I sent them monitor my health results also showing out of range and a declining T3. Not interested. I asked for telephone appointment to discuss, refused.

Well I havent been great and latest monitor my health results came back today. 100mcg levo for 18 weeks now -

TSH 13.8 (0.27-4.2)

FT4 15.1 (12 - 22 pmol/L)

FT3 3.5 (3.1 - 6.8 pmol/L)

I also had an nhs test this morning, I'm assuming it will be similar so I'll get my increase.

I mean Everyone on this forum doing the work and research for them, but they arent prepared to listen!

Anyway, just venting, I will carry on optimising my vits etc. Thank goodness for you all for sharing your knowledge, and our forum admin, don't know where I'd be otherwise xxxx

[humanbean]

On what grounds were they refusing you an increase in Levo?

Your TSH at 4.27 was over the reference range.

[mrskiki in reply to humanbean]

They wouldnt talk to me. Used to be 6 partners in the practice. New guy moved in seen them all off. More of a businessman. Locum who diagnosed me lovely but tbh will she stay? Previous salaried gp i used to see told me he was salaried and had no chance of partnership, so took early retirement. Neighbouring towns- seem to have built new surgeries and recruited!

The sole 'partner' also shouted down the phone at me when I told him I had high Tgab. Said I wasnt autoimmune until an endo said so ... I do believe there are overworked and overstressed GPs. I also think there are some working the system ...

[buddy99 in reply to mrskiki]

I wonder what makes GPs shout at patients when they mention TgAb. Could it be that a good number of them don't know that there are other antibodies indicating Hashi than TPO? There are quite a few websites (Mayo Clinic, Harvard Health, even on pubmed) that mention TPO ONLY. I wonder whether doctors are not properly informed about TgAb. Just saying, because I was also yelled at when, based on normal TPO, I was told there was no evidence of autoimmunity and I responded that my TgAb was usually high. I agree, though, that doctors are overworked and overstressed. The current system makes victims of patients AND doctors. Capitalism!

[mrskiki in reply to buddy99]

The partner is a bit arrogant and never appears too competent to me, only seen him a couple of times and didn't go well then either, both times he was actually wrong. I think lack of knowledge makes people defensive, so they try to avoid any questions by talking loudly at you, he is also difficult to understand. Something definitely odd about their reaction to TgAb, perhaps it's because they should check for gluten and they want to keep referrals down, or send me for a scan or something, or the NHS is pretending it doesn't exist because its not in their guidelines.

[buddy99 in reply to mrskiki]

You definitely have a point about lack of competence being paired with defensiveness. The endo following up on the "no autoimmune" send me for an ultrasound to see what's what. She then said, "Any veterinarian is better educated than that doctor. Don't go back to see her." Now I'm not sure whether that is actually a compliment or an insult to veterinarians.

[mrskiki in reply to buddy99]

Yes I was reading the vets page on treating hypothyroid cats the other week, very practical but I guess their doses are quite small so I might have to try perhaps an equine vet at my current weight. There is so much less discussion on TgAb than TPO. I was sent a good link to a paper on this early on in my diagnosis, which I think remember indicated high TgAb can be linked to worse symptoms.

[mrskiki in reply to buddy99]

This was the Tgab paper slowdragon posted me 10 months ago

tandfonline.com/doi/full/10...

[Jazzw]

Oh mrskiki, I feel so much for you. Vent away—you have every reason to need to.

It’s so frustrating you could weep, couldn’t you? This isn’t even a borderline case of “might benefit from an increase in dosage”, this is a “this person is very under medicated” situation.

I fear for the next generation. The way things are going, they’re never going to know good doctors, are they?

[buddy99 in reply to Jazzw]

Jazzw, you hit the nail right on the head. Within 10 years in the USA medical error moved from 9th leading cause of death to third. Give it a couple more years and it will be the leading cause of death. Then we have to ask ourselves how life threatening it really is to see a doctor.

[mrskiki in reply to Jazzw]

Yes, I think the conscientious GPs probably get overloaded and the hangers on there for the money take over and just gather patient numbers, refusing to take on partners or full time GPs who may want a say in how things are run.

[Litatamon]

I don't know if this gives you an ounce of comfort but I am so flippin' angry. I would send a letter in documenting it all. Just livid.

[mrskiki in reply to Litatamon]

Thank you, yes its actually a real help, I was trying to be practical in asking for the increase, in a few different ways even going back and suggesting just half the increase if they had concerns, and what the concerns were - I did worry their plan was to keep me hovering just outside the TSH range ....

[Cornwaller]

Can you change doctors? Or see a doctor privately, for example at a Nuffield hospital. What your asking for is pretty basic.

[mrskiki in reply to Cornwaller]

Thank you, yes as you say this is the basic stuff. I initially thought I would get myself on steady dose of T4 as starting point then perhaps change practices or try a thyroid functional doctor or endo privately if ongoing problems. But I got in such a muddle couldn't work out what to do next but I think change of practice is probably good move.

[1tuppence in reply to mrskiki]

Oh, I'm so sorry this is happening to you. I do so understand the "getting in a muddle" where thinking what's best to do...about anything really, when meds aren't doing what they need to be doing. You've done the best thing in the circumstances, in coming here for help, support and advice. Hugs x

[Charlie-Farley]

Hi mrskiki 🤗

Put it all in writing. Results, your request, a bit of explanation and references to debunk the dose by TSH. Tattybogle has compiled a body of references- it’s a pinned post.

I have a road map to getting to full replacement dose on my bio. Also my latest posts cover my reports. Click on my face it will take you to all of it.

Hard copy report (keep a copy for yourself) submitted to reception should be uploaded to patient access (make sure when you hand over). Do this a few days before your appointment (I prefer telecon).

This directs conversation and they can’t summarise the appointment only in their OWN words. They also have to directly REFUTE your report, your scientific references and your rationale for a dose increase.

With those results it is blatantly obvious that your GP is a clown and has not a clue. There is a passage at the start of NHS guidelines which gives latitude to dose according to symptoms if they would but read them- useful to throw their own guidelines at them.

nice.org.uk/guidance/ng145

The first paragraph in the NICE (NHS) Thyroid Disease,Assessment and Management guidelines says : 

"Your responsibilityThe recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Go for it! 😊👍

[mrskiki in reply to Charlie-Farley]

Thank you, yes the pinned post is fantastic collection of information. I really wish the couple of lines of info from the Gpnotebook page about aiming for lower part of TSH range if you still have symptoms would be added to the main NICE guidelines as they cause so much grief, and reliance on the GP (or nurse in my case) being prepared to read and accept the additional information, or even understanding it. I read your roadmap the other day, great advice, I need to keep pushing onwards either with this practice ... or another, with a bit more determination!

[Charlie-Farley in reply to mrskiki]

Do mrskiki ! 🤗

As frustrating as it is they are indoctrinated with very limited (set) ideas and need to be challenged and encouraged to critically think. It doesn’t take long to overtake and eclipse their limited knowledge. We quickly become the experts. 😊👍

[buddy99]

Go for it! Your suffering is unnecessary. I wish you much luck and courage. With all the help here and your determination you can turn things for the better.

[Batty1]

Find a new Endo …. I fired 7 Endo’s over the past 5 years because none of them gave a damned about how I was feeling as long as my test looked fine. I did eventually settle for one Endo although he is far cry from perfect and eventually probably will get rid of him too because he follows the American Thyroid Association thoughts who in my opinion is out of touch with people and antiquated.

[mrskiki in reply to Batty1]

Probably the best way - Yes I think I may well have to change NHS doctor and also go private and see an endo or doctor specialising in thyroid, would be nice to get to get as far as I can with T4 dose first as starting point if I can manage it without the GPs getting in the way