Feeling low after docs appointment - questionin... - Thyroid UK

Thyroid UK

120,226 members139,879 posts

Feeling low after docs appointment - questioning myself again

PurpleNel profile image

Hi all,

just had a telephone appointment with doctors to discuss my Medichecks results as shown below.

I don't know why being dismissed AGAIN has upset me so much but it really has. According to him this can't possibly be a thyroid problem and my high antibodies don't indicate much and certainly not any problem with thyroid. He totally dismissed any possibility of autoimmune thyroiditis/Hashimoto's.

The fact that I feel so very ill (and with practically every hypothyroid symptom and several more), he says, must be down to something else and he will start investigating other possibilities. This lump I feel in my throat on swallowing and which restricts my breathing when I lie down can't be at all connected because if I had a goiter it would show from outside and the nasal endoscopy (if that is the right term - camera up my nose anyway!) is of no concern (even though he told me before they did find something which is why they sent me for a Barium swallow test) Now I am doubting everything again....including my sanity.

Not really sure why I am posting this. So very tired of being so very tired and ill. Just needed to vent I suppose, so thanks for listening.

IRON STATUS/FERRETIN - normal range 13 - 150 - mine is 167

FOLATE SERUM - normal range 2.8 - 14.5 - mine is 4.5

B12 - normal range 25.1 - 165 - mine is 92

VIT D - normal range 50 - 200 - mine is 56

TSH - normal range 0-27 - 4.2 - mine is 5.04

FREE T3 - normal range 3.1 - 6.8 - mine is 5

FREE THYROXINE - normal range 12 - 22 - mine is 16.2

THYROGLOBULIN - normal range 0 - 115 - mine is 552

THYROID PEROXIDASE - normal range 0 - 34 - mine is 233

62 Replies

You have Hashimotos Thyroiditis and your TSH is too high. The GP is a fool quite frankly. You have to get yourself out of there and to see someone else. Can you see anyone else at the practice? If not, ring up surrounding practices and see who is taking on patients and then consider switching.

Thank you! Just for listening - don't know what I would do without this forum. I think I am going to have to go down the private endo route. I just can't keep going like this.

No, you can't. Your T3 is well up in range and with such high antibodies you might be going through an active phase or just recently been through one. Your GP has proved he knows nothing about thyroid. It's shocking how hopeless and stubborn they can be.

Where are you based?

Norwich

That's a shame. The private endo I see used to hold a clinic in Norwich, but has stopped it and is Nottingham only now.

Do you think it possible to see another GP at the practice? Or to change practices? I have to admit I have no patience with doctors now. When I want action I pay.

That is a shame. I understand that some endos are doing skype calls so I will contact one that someone on here recommended. Perhaps your Nottingham endo would do a video consultation?I don't think I trust GPs anymore and don't have the heart to change GP or practice and go through the whole thing again.

Localhero just reminded me about video calls. Mine will, not sure how keen he is on them, but I had one during lockdown that was excellent, just as good as in the room as he was sharing documents with me as well as video. The only draw-back for him is that he has to go home to do it. The Internet isn't good enough in the building where he rents a clinic space.

chubi52 profile image
chubi52 in reply to PurpleNel

I'm Norwich where do you go? My doctor quite understanding she been calling me and spending a while on the phone discussing my results..

PurpleNel profile image
PurpleNel in reply to chubi52

Drayton Medical Practice. Where is yours?

chubi52 profile image
chubi52 in reply to PurpleNel

Wensum Valley medical practice nr5 post code

I was going to say make another appointment with another doctor second opinion you know you are ill and need help

I’m of the same opinion as FancyPants54 You need to see someone else. This GP is completely useless. You’re clearly hypothyroid and deserve to be treated.

You can ask for a list of recommended endocrinologists here:

thyroiduk.org/help-and-supp...

FWIW, I think some endos are open to seeing patients online right now - the pandemic seems to have added some flexibility into things, so even if there’s not one in your area, don’t give up hope.

I'd forgotten about Zoom/Skype appointments. Yes, mine will do that when needs must. Prefers face to face, but will do online when needed.

Could you PM me with details please? Is he/she kind? I so need gentle and kind right now.

Have just done so.

PurpleNel profile image
PurpleNel in reply to Localhero

Thank you! As usual the doctor makes me cry and my thyroid community lifts me up.

PurpleNel don't let the doctor make you cry 🤬 like someone already said your GP is a fool👍I have been on this painful journey for many years myself and my 2 daughters and now my grandson 19yrs all have Hashimotos. I have learnt so much by my own research and this group which is amazing, helpful and so knowledgeable. One of my daughters is fine on Levothyroxine but myself and older daughter have had to go down the private route. We now feel like we are being listened to and getting the correct treatment. We feel really good and most of our Hypo symptoms have gone 😍 Keep going, believe in yourself, you will get there. I also believe treatment for hypothyroid will have to change in the future, there are too many people suffering.I believe it to be medical negligence that people are left to suffer for so long, when there are alternative treatments out there. Perhaps we need to get a medical negligence solicitor to take up our cause 🤔

Wouldn't that be wonderful....rise up against the system. When I am well again I might just do that. I had no idea until coming on here that SO many people were being left to live half lives and suffer. This group IS amazing. I feel so lucky to have found it. Thanks so much for the vote of confidence and your words.

Kowbie profile image
Kowbie in reply to Millie103538

That sounds very good to me hope you don’t mind me butting in kowbie

PurpleNel, I’m sorry to hear you are feeling so rotten and feeling like you’re not being listened to. I hope you can find GP that sees you have a thyroid issue, it’s so obvious from your results. Do take a look at Thyroid UK website if you haven’t already.

PurpleNel profile image
PurpleNel in reply to hobbycat

Thanks Hobbycat - pathetic isn't it but just getting some there there theres on here instantly makes me feel ready for the fight again

Hi PurpleNel,

I'm sorry and angry that this is happening to you!

I also know what it feels like when your concerns are continually dismissed by your gp. Also you start doubting yourself and wondering if you are making things up.

As you know this forum is great and everyone will support you. ☺

Best wishes.

PurpleNel profile image
PurpleNel in reply to Hedgeree

This forum has SAVED me. I am so so grateful. Thank you for being angry for me.

Hi PurpleNel, that lump feeling is so commonly reported on here. I started with it when I was titrated up to 75mg 2 yrs ago. It was awful. I eventually was doagnosed with a Sjogrens flare which I didnt know I had and Esinophillic Oesophagitis. I wonder if Levothyroxine impedes the bodies ability to process Gluten and Dairy. I was given steroids to swallow. I now take LDN ( Low Dose Naltrexone) on private precription and I swear by it x

No, levo doesn't do that. :)

I think it could do and helvella has been looking into a possible link x

OK, well let us know if you find out more.

That is interesting. Didn't know that obstruction in the throat feeling was so common. Never heard of those conditions you have either. Learning so much.

Espeegee profile image
Espeegee in reply to PurpleNel

A lump in the throat can be globus hystericus usually shortened to globus. As it's name suggests it's often caused by anxiety and is really quite common. I had it a lot with panic and anxiety attacks and it rears it's ugly head quite a lot, I have it right now! It seems quite a regular feature of thyroid sufferers. I haven't yet found a sure fire way of getting rid of it, usually when I'm less anxious it goes. It's one of those things you just have to learn to live with.

No its a physical thing. I was diagnosed with Sjogrens flare as damage could be seen by U/S scan and Esinophillic Oesophagitis was diagnosed from biopsy of oesophagus. I think a lot of people with swollen throats like me are fobbed off with that term ‘Globus Hystericus’ x

Timbutdim profile image
Timbutdim in reply to Espeegee

I too have had that lump accompanied by tightness when lying down and felt like I couldn't breathe, I took antihistamines and problem went away.

One thing that hasn't been mentioned by anyone is that goitres don't always stick out from the throat and cause a bulge. They can grow in any direction, including backwards towards the throat, down under the rib cage, or forwards to create a visible goitre.

plant_lady profile image
plant_lady in reply to humanbean

The endo I saw only diagnosed a goitre after asking me to lift my chin and swallow.

Otherwise it couldn't be seen. (Or apparently felt. GP dismissed me after examining me for 2 seconds when I said swallowing could be difficult.)

PurpleNel profile image
PurpleNel in reply to plant_lady

Interesting.....so this lump thingy I feel I have in my throat....if i touch (and I mean touch, not press) my neck where my thyroid is (I think - lower down my neck anyway) then I instantly gag and cough. Does this tie in with what others have experienced? I would appreciate any thoughts and ideas.

plant_lady profile image
plant_lady in reply to PurpleNel

I haven't experienced that myself but it sounds entirely plausible that it's a goitre.

PurpleNel profile image
PurpleNel in reply to PurpleNel

And also, would a goiter or thyroid nodule/swelling be picked up with a nasal endoscopy? I had one of those last year and they did find something and sent me for a Barium swallow from which it all fizzled out because that was normal. When I questioned doctor about that yesterday he said it could be anything - some non-worrying kind of swelling.But I can only sleep sitting up now or this feels like it is pressing into my throat and restricting my breathing. I have told the doctor all of this but he doesn't seem interested.

SlowDragon profile image
SlowDragonAdministrator

See flow chart on top of page 2gp-update.co.uk/Latest-Upda...

FOLATE SERUM - normal range 2.8 - 14.5 - mine is 4.5

Folate too low

VIT D - normal range 50 - 200 - mine is 56

Vitamin D far too low. Improving to around 80nmol minimum and around 100nmol may be better

PurpleNel you are definitely not alone in this, and the lovely knowledgeable people here are ready to help you fight. I posted something similar a couple of months ago when I thought I was being a total wuss and drama queen, with similar symptoms and zero action from my GP.. After taking the advice here I have an appointment with a private Endo in a couple of weeks and I feel ready to take on the entire surgery if it gets me feeling better! Feeling yukky now and then is all part of life but living with it 24/7 and being ignored is pants. I know you will get past this with the help of these guys! A remarkable bunch 😊

What an inspiring and hopeful message. Thank you! And the best of luck with the endo - may you be happy and healthy very soon.

I can't add much to what has already been written but I can empathise with you completely.

I remember snotty crying to my mum after being dismissed by the GP and wailing that 'the Dr is stopping me getting well'. After that I just decided to throw money at the problem and went private.

I did manage to get a dose increase but only after a GP insisted that my symptoms weren't thyroid and tested for diabetes, liver and kidney problems, another FBC... All of which came back absolutely fine. As I knew they would. That GP also told me I was only tired because we're in lockdown! The arrogance of him still makes my blood boil.

Can you see a different GP?

Can you go private?

Don't get angry and stay angry because it will deplete your finite resources but it is worth fighting back; it's the only way progress is made sometimes.

PurpleNel profile image
PurpleNel in reply to plant_lady

This forum is so empowering. I have gone from feeling so helpless and hopeless and that there is nothing I can do to something I CAN do. What a huge gift. I am ready for the fight. Not just for me but for all those who come after.

Exactly as you fobbed off by 3 NHS Doctors, 1 NHS Endo and also PALS when I made a written complaint. Told it was not hashis with high TPO and a THS of 15 plus numerous symptoms. You can try OTC thyroid glandular like Metavive before throwing money at private endos. That is the route I chose and it works fine for me. Haven't been near the NHS for a few years now.

PurpleNel are you on Facebook? If so, please join us on Thyroid Support Group Norfolk.We can share experiences about results etc, like on this wonderful forum.

More importantly, we have members with experience of different GPs, surgeries, and consultants in Norfolk., and you could well get best advice on who to go to.

PurpleNel profile image
PurpleNel in reply to TaraJR

That is extremely helpful. I have stayed away for Facebook for over a year now but for something like this I could brave it again.

I’m also so angry for you. I definitely think you should change GP. This one is useless. I gave up on the system years ago but was lucky to see Dr P (now retired). I use Metavive and self check with Medichecks and try to stay away from doctor as much as possible - although they are aware of what I’m doing and just leave me to it as long as my TSH is OK. I also agree with Tara above that the local Thyroid Support Group would be a huge help for you.

Just wanted to add that an examining doctor could not feel my goiter, and I have five nodules and two of them are quite large (3.6 cm). Only found on ultrasound.

And they have caused me to wheeze in certain sleeping positions.

All the best to you, hope you find some better care.

Do the GPs in your practice have different specialisms? I have recently started seeing a GP at my practice who specialises in women's health, and I finally feel I'm getting somewhere. Good luck ❤️

I think you definitely need to see a different GP as this one sounds like a numpty! You should be able to see another one in the practice

Classic Hashimotos presentation. See another doctor!!

Your vitamin D is low too. Ideally should be up around 90+ and low vit d can mimic or make worse thyroid symptoms.

I read on this site that selenium helps when you have a flare: I take 4 brazil nuts a day when I'm feeling dodgy, and particularly if I feel my throat getting a lump. I reduce that to a sporadic 2-4 every few days when I'm feeling strong and well. Hope that helps.

PurpleNel profile image
PurpleNel in reply to ZeilaJee

EVERYTHING helps. Thank you. I will try it - I have nothing to lose. Have had this lump in my throat for over 2 years now.

Look for the 'High in selenium' info: it can be around 75 iu(?). Seaside Susie has given lots of advice on here about brands with high selenium content and what to take instead if you prove intolerant (I'm a Hashi and eat brazils fine). Fairtrade she said are pretty good.

I actually do eat brazil nuts ....thought it was just because I liked them but perhaps my body is telling me something

I have a 5cm nodule. It can be seen and felt externally, but I had minor swallowing issues so had a nasal endoscope. I was just told not too squashed In there. If you have a swelling and its affecting your breathing - that’s understandable concerning. How can the doctor just dismiss this?

I’ve found when I spoken to doctor face to face or by phone the actual notes they record are minimal. With whole portions missing (ignored) entirely. If there’s an actual record listing the issues their responses tend to be much more thorough.

Does your doctors surgery have a way to messaging direct? Many practices have a system to log health concerns. My practice originally had it as a additional means of contact, now they actually refuse contact by other methods, even if we get through by phone they insist we message in.

If you were to state by message, email or letter exactly what your issues are. How seriously you are being affected. That your results show XYZ. That antibodies are relevant as it demonstrates thyroid under autoimmune attack and means you will continue to have lowering thyroid levels. That you have read about the subject and found information sources saying treating will help. They may take more notice?

You could say you want some clarity as your symptoms leave you brain fogged and you are unclear what the plan is to help your health after the telephone appointment. Not so much as a complaint but a prompt. They’ll also be a clear record.

All of that is very helpful advice. Anything and everything is worth trying.

Is your GP a young one, fresh from Med School or an old fogey who thinks he is the only one who is right!???????

I would feel very inclined to complain very loudly to your Health Board, because you are sick of having a GP who knows nothing about the Hashimoto's auto immune thing (after all, it isn't exactly new technology is it?) or the basics of Hypothyroid?

How long can you/we go on like this? You shouldn't have to pay for a Private Endo, we need GP's to have at least a basic knowledge surely?

If they haven't been taught the rudiments of something which is so common, why are they getting paid to treat Hypothyroid patients???? They have all been getting paid for not seeing us because of the Covid excuse and it looks to me as though it will stay with telephone consultations.

My own complaint to my GP has been escalated now, so the GP has to answer my questions. He won't like that, but he is getting it and after that it will be the Health Board's turn. I have sold my house because I am sick of my GP. I only hope I can find a decent GP when I move on.

Rant over, but good luck, it sounds as though you are going to need it.

Rant totally understood - I have been ranting my own fair share. This whole system is a disgrace. Just feel so sorry for all those people who can't afford a private endo. And to be honest if I don't get the private endo thing right at the first attempt I won't be able to afford another either. What a horrible position to be in. In the meantime I am existing, not living.

I want to scream my woes from the rooftops but I barely have the strength to get through my work day and have no energy left for fighting a GP/health system battle. I am so so exhausted all the time with severe brain fog so how long I can keep working is a big thing hanging over me. I have already slowed down to a working crawl. I am scared and tired.

I feel just like you so your not alone. I had right thyroid removed 2 yrs ago. ? I had to as breathing was bad and goitre large. Im struggling and gp isnt bothered. Put on 25 mg thyroxine. The thing is I cant take it with migrains and diarrhea so told gp who said we dont supply any other. Im on nothing just symptoms as per this great online help. I was 5,4 but feel awful. Thought I would relay my thoughts. Good iron, good bs.

PurpleNel profile image
PurpleNel in reply to 2leapittoo

Thank you for sharing. The more i learn here the more appalled i am at the level of care being given. The NHS is not a free service - we all pay plenty of taxes for it and it appears the system is failing us badly. I am so sorry you are suffering.

Thank you. Yes Me and my husband paid our tax and nice and we know foreign folk come into our country for holidays and book gps .Im going to be more assertive and change gp but the nhs is in a fix now. Im not feeling well and it seems no gps care. Thanks again.

I have just read all these messages of support, suggestions and advice after having felt so very ill for a couple of days and not being able to catch up on the messages. I am overwhelmed. Thank you so much to every person for all your words and kindness.

You most assuredly are not crazy - Fancypants 54 is giving you a lot of great info. Hope you get to follow through and get some relief soon.

In the meantime, take a look at your iodine intake, with a view and question: “Is it too high?” Iodine is in almost everything - and is a necessary nutrient. However, some of us have difficulty eliminating excess iodine if we get too much - and especially women for some reason. Foods with very high iodine include egg yolks, cheese, all dairy really, and salt “iodized salt”. Seafood can also be sources of high iodine. Try 30 days of restricting high iodine foods for a “feel good” experiment. Kosher salt is best, better than sea salt. Here in the US, we also have to curtail commercial bread, as iodine is used as a “dough conditioner”. I discovered I can eat homemade bread, even though for years I thought I was gluten intolerant!

You are going to feel better very soon - stick with your friends here, and find a better doctor. Some of them (Drs) do listen and can be helpful.

You may also like...