GP in denial about thyroid ... referred me to R... - Thyroid UK

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GP in denial about thyroid ... referred me to Rheumatologist ??

seaside-girl profile image
seaside-girl

Hello again. I went to see my GP last week as I am really suffering with painful arthritis in my fingers & toes, as well as ulcerative colitis, however, thanks to the knowledgeable people on here, I also know there is a problem with my thyroid too, which my GP seems to be in denial about. I asked for some more blood tests, but she said it was not necessary to be tested for Ferritin or Folate, so I don't have results for those I'm afraid.

Here are the newest results from September 16th but still awaiting ANA results.

TSH 3.62 (0.3 - 5.5)

T4 12.5 (12 - 22)

T3 4.4 (3.1 - 6.8)

TPO 159 (< 34.0)

RF < 10 (<14.0)

ESR 24.0 (<35.0)

Serum 3 reactive protein level 8 (< 5.0)

Vit D 89 (50 - 144.00

My previous result four weeks ago for Vit D was just 28.0, so this latest result is after a 15 day course of Fultium 20,000iu, now on maintenance dose of just 800iu. I told the doctor this was not a high enough dose, but she said it was all she could give me, so I will be supplementing if someone could please advise me about what dose I should be taking.

GP says there is obviously inflammation going on in my body somewhere, probably due to tummy & joint problems. I am already under Consultant care with the ulcerative colitis & digestive problems & my GP has now referred me to a rheumatologist with my painful swollen fingers & toes. Incidentally & have had painful arthritis & muscles for many years. I am now taking 1000 sublingual Vit B12, & also Vit K2 alongside the Vit D prescribed by the doctor, (even though she told me this wasn't necessary). When I asked my GP to put me on a trial of Levothyroxine, she said she wasn't allowed to as my blood tests results were all 'within range', however, she did say that she 'couldn't understand' some of my blood test results, (& this is an experienced GP !) When I asked if I could be referred to an Endocrinologist as I feel so poorly, she said that was not possible either, but after accompanying my daughter to see her Endo recently, I can see why people on here complain about them. The only reason I asked for a referral, was because I had hoped to be referred to a different one, who may have been more sympathetic. We are both now considering paying privately & travelling to see someone who may be able to help us feel well again. I also really appreciate the wonderful responses & information I get from here too. It's like having our own private consultants 24/7, all of whom actually listen to us & give us sensible advice, so a huge thank you to you all.

39 Replies

Hello sea-sidegirl,

Gray goose is probably the expert on blood results. To me however the only thing pointing to thyroid problem is the high cholesterol, that can as well be caused by other things. Your CRP and ESR are within normal range so really don't understand the inflammation diagnosis altogether. Your swollen fingers and pain is ofcourse inflammation. Often in RA this does not come up in blood tests. Rheumatologist is perhaps not a bad idea. Your vit D could be higher I would take a daily dose of 5000iu, or every other day, until you get your levels over 100. Here is an interesting interview that may help you..

thyroid-info.com/articles/r...

Hi Simba 1992, thank you for your reply. No-one has ever mentioned my cholesterol level, so is it the Serum 3 reactive protein that shows this up? My doctor did once ask me how often I drank alcohol, & seemed very surprised when I told her never, so just wondered if there is any connection here. I will certainly take your advice about the Vitamin D as I didn't think my present dose was high enough. Wow !! I just read through that interview .... what a wealth of information it included. I'm afraid a lot of it completely went over my head as I don't seem able to digest things like I used to, but several things just jumped out at me, so I will get my daughter to print it off & explain it to me bit by bit. Thank you so much for directing me to this.

Sorry for the mix up. Ment that TPO high may point at active AI condition (?). Your CRP is ok.

Ulcerative colitis can cause arthralgia and arthritis, I have both uc and painful fingers and toes and my crp is usually raised.

I have often thought there is a link, & this forum has helped me understand how one thing can affect another so thank you for your reply.

SlowDragon profile image
SlowDragonAdministrator

You have high TPO antibodies so definitely Hashimoto's.

Selenium supplements can help improve conversion

About 90% of hypothyroidism in UK is due to Hashimoto's.

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. If they are too low they stop Thyroid hormones working.

As your supplementing B12 it's also good idea to take a good vitamin B complex (eg Igennus Super B complex)

If you start taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

As you have Hashimoto's then hidden food intolerances may be causing issues, most common by far is gluten. Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/why-changi...

scdlifestyle.com/2014/08/th...

NICE guidelines do say if you have raised antibodies and symptoms then you should be started on Levo

All thyroid tests should be done as early as possible in morning and fasting (and if taking Levo don't take it in the 24 hours prior to test, delay and take straight after.) this gives highest TSH

If your test wasn't done under these conditions, might want to consider a private one in month or so, once you are on gluten free diet and vitamins improved

Your FT4 is very low

Vitamin D - Better You mouth spray is good as avoids poor gut function. Try 1000iu strength - may be 2x daily.

Magnesium supplements recommended too. Calm vitality magnesium powder is cheap and easy to use

Thank you so much SlowDragon for all this useful information. I had never heard of Hashimoto's until four months ago when my daughter was diagnosed, and now I have it too, though thinking about it all, we have both probably had it for years without knowing what was wrong. I can see now that gluten free is a must, but I realise this will not be easy as I seem to like all the foods containing lots of gluten. I will certainly be speaking to my GP about the NICE guidelines regarding antibodies & symptoms as I have both yet she fobbed me off saying my results were all within range. The blood tests were all done first thing in the morning after fasting all night too. I have looked at some of the links you sent me & they make very interesting reading so thank you so much for those too. I shall read the rest tomorrow & make notes. It's all such a lot to take in but I do appreciate your advice thank you.

Love your advice SlowDragon

SlowDragon profile image
SlowDragonAdministrator

Some pages about how ulcerative colitis and Hashimoto's are strongly connected too

hypothyroidmom.com/leaky-gu...

naturalendocrinesolutions.c...

I know .... it's all beginning to make sense now & fitting together like a jigsaw puzzle. I had no idea until recently how closely linked all my 'ailments' are.

Your TSH is too high (needs to be much lower), your T4 is too low, your T3 could do with being higher. You are showing as hypothyroid & Hashimotos. Are you taking any thyroid meds?

Hi marigold22, No I'm not on any thyroid meds as I saw my GP on Wednesday & asked her to put me on a trial dose of Levothyroxine, but she said she wasn't allowed to as my blood tests were all 'within range' & also for the same reason she couldn't (or wouldn't) refer me to an endocrinologist. I have decided to go gluten free within the next two weeks. I just need to buy a couple of books on the subject so I know what's what, & use up the food I already have in. I'm also going to buy a printer so I can print off some of the brilliant information I have been sent through this wonderful site. Thank you for responding.

Gluten free is probably easier than you think, it's pretty much just avoiding wheat products, here's a list - "The Main Foods to Avoid on a Gluten-Free Diet

Wheat (durum, semolina, spelt, bulgur, wheat flour, wheat starch and modified wheat starch, couscous, wheat rusk, wheat bran, wheat germ)

Rye.

Barley.

Triticale (a hybrid of wheat and rye)"

Oats aren't on the list, nor are things like almond flour or coconut flour. There are lots of recipes on line for types of bread or biscuits you can make if you're a bread addict ;) I wouldn't bother with gluten free products off the shelf, they're expensive and highly processed.

Thank you Espeegee, I am seriously thinking about making my own bread as & do enjoy a sandwich. My daughter & I found the gluten free range at Aldi quite reasonable but things off the shelf do taste very different to what I'm used to.

This might help, Dr. Mercola is pretty reliable on most health matters - articles.mercola.com/sites/...

shaws profile image
shawsAdministrator in reply to seaside-girl

See link of Interpretation of results above. Its a pity doctors are completely untrained either in clinical symptoms or all of the possible tests, i.e. T3, T4, Free T3, Free T4 and thyroid antibodies.

You also need B12, Vit D,iron, ferritin and folate. Blood tests for thyroid have to be at the very earliest, fasting (you can drink water). If you were taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take them afterwards.

It's a shame your test shown above was only done in September. I suggest you try to get another one done for definitely TSH, T4, T3 and as many more of those you had done in September. You may have to wait at least 6 weeks, but GP will probably refuse. You need to not eat anything for 12 hours, only sip water, have the test done as early in the morning as possible. Alternatively you could get your thyroid bloods done privately by Blue Horizon or Medichecks thyroiduk.org/tuk/testing/p...

Your TPO (thyroid antibody) is high therefore you have Hashimoto, your vitamin D is much too low.

You should also have tests for vit B12, ferrous & ferritin. These + vit D need to be optimal. The private blood tests mentioned above do Thyroid Check Plus Eleven bluehorizonmedicals.co.uk/t...

PS I meant to say, if you don't eat before your next NHS blood test it may return not in range for your picky doctor.

Hi

I definitely agree with marigold22 and slowdragon.

Privately through day blue horizon the blood test ( there are always offers on) is circa£99/ 120 to test all the thyroid functions plus the main vitamins.

When you have hashimotos your tests (until you are well onto the gluten free and dairy I'd limit - not good for inflammation and there is no health benefit in sugar) your results may spike upwards and downwards too- so a little erratic.

Tsh too high

T4- come gp it's only just in range

T3 is low but they ignore it.

Seaside susie was right they only really look at tsh 10 plus.

I have no doubt that these low t4/3 are making inflammatory conditions worse.

The d3 ( vit d) needs to be taken with k2 mk-7( see dr mercola web page)

Articles.mercola.com>vitamins-k2-benefits discuses how the vitamin helps inflammation.

The article discusses the vitamin move calcium to the right places.

I'd go for one 5000 ui daily and test on 3 months. It needs to be taken with say a blob of coconut oil as it absorbs better. Others take it with their fattiest meal of the day.

I'd suggest the diet change and if there is no support from yr gp do the bloods and see what they are like. I'd leave off your supplements for a week to get a true reflection. Good endos are not guaranteed and if you can't get a referral then I'd personally self medicate.

But once antibodies are detected they are supposed to start you on thyroxine.

The 5 stages of hashimotos throidosis dr Izabella wentz- thyroid pharmacist is available on line and really helpful.( just search hashimotos)

Esr quick tip women age plus 10 then halved. Years ago 14 was normal- another range increased!!

Good luck with the diet and tests. Remember you are never alone.

Thank you Howard39. This going gluten free is going to be a really hard task for me to follow but I know in my heart of hearts it is something I have to do. I have tried many times unsuccessfully to lose weight, but it isn't easy, especially as I have such a sweet tooth. I felt the artificial sweetners I was using were bad for me, so I now have two spoonsful of sugar instead. I'm also very fond of nestles condensed milk on my breakfast cereal, & these two things are going to be the hardest things to give up. I think I've been kidding myself for too long that I need more sugar for energy, when all it does is comfort my craving to feel better. I do otherwise eat well & have a well balanced diet, but I think at my age (74) old habits die hard. I hope to be gluten free within about two weeks. I do already take K2 with the VitD, & I have it with my dinner. Thank you for the support.

2 tsps of sugar 👀 Condensed milk on CEREAL 👀 Just kidding but that's a lot of sugar and cereal for breakfast is not the best option. Have a look at a ketogenic diet, it has a great deal of support and is reckoned to be the optimal diet for good health. I have a lot of faith in this site, run by doctors and other professionals who all know their stuff - dietdoctor.com/low-carb/keto Other things you could use for sweetness which are also gut friendly are inulin and collagen, both have a lovely sweetness and will just disappear into yoghurt, milk or juice, I've also been using beetroot powder, yes it's very red lol but it is amazingly sweet so you don't need much. I don't recommend it in tea or coffee though!

I know I have some terrible habits I need to ditch fast, but thank you for all these alternatives. I have just written them in my diary ready to go on the shopping list. It's good to know all this as I'd never heard of inulin.

Thank you Greygoose, am more informed relating to my Hypothyroidism, should call this journey 'The Long & Winding Road'.

Hi, I agree it is a very "Long & Winding Road".

Ask the Rheum, to refer you to an Endo - that will go via your gp. Will your gp she still thinks it's a waste of time, coming from another praticioner? And go against their wishes? I'd change GPs or practices and try again and again. When you're too sick to function is he going to be theirbto help you throughout the day. If someone doesn't have your interests at heart then move on. You're not faking your systems but talking a brick wall. If he retires or leaves the practice it will leave you in the same boat as changing gps or surgeries. Take your health into your hands and move. Why do you feel the need to have to pay for a consultant? I know it's not your issue having to deal with those that come after you but if you educate and can get through to your gp (compliant or research and show him your proven findings) that could pave the way for others. Some who cant afford to go privately or are not strong enough to fight. And indeed don't know the ignorance that goes on through lack of gp knowledge etc. Sorry for the rant but I feel a lot of us just take what we're given as acceptable. It's not. Take back your power and your get on your road to wellness. 💜

Hi Ebony Evans, I had already decided to ask the Rheumatologist about referring me via the GP to an Endocrinologist. I agree with everything you say but this diagnosis has come as a huge shock to me & I need time to work out in my own mind what is best for me. Last week was the first time I had ever had a proper discussion with my own GP about my thyroid problems, so as I am learning more & more about the whole issue regarding ranges, CCG guidance etc etc, I shall be more informed about what is best for me. At my next appointment I shall be leaving her in no doubt, that if I don't think she is right about something, I will take whatever steps are necessary to correct it. I have been with the same doctors surgery for 55 years, & during that time, I've seen lots of good (& some bad) GP's come & go. I feel I will soon have have enough confidence (& knowledge) to take them to task if I feel I'm being fobbed off as I am no easy pushover, but I need to get over the shock first. As soon as I buy a printer, I intend to print out things I think the GP should read up on, & if they don't rethink their strategies after that, I will become very vocal .... publically .... about their obvious lack of knowledge regarding their patients health & wellbeing. Through the wonderful support on here I feel it wont be long before I feel well enough to take an active part in campaigning for a better deal for everyone, as I am not backwards in coming forwards. Thank you.

Is it at all possible that you have a form of arthritis that is related to the colitis?

Or one of the other inflammatory arthropathies that don't tend to show up in the usual blood work, like Psoriatic Arthritis, or Inflammatory Osteoarthritis (fingers and toes are common sites for both of those)?

I wonder if it might be worth your while seeing the rheumatologist irrespective of other considerations because you can have your hands and feet assessed?

Thank you. Yes I have now been referred to an excellent rheumatologist so hopefully I'm now moving in the right direction.

SlowDragon profile image
SlowDragonAdministrator

Good breakfast option is to make your own museli - use certified gluten free oats (very cheap) add chopped dried fruit, nuts and seeds of your choice (raisins, cranberries, apricot, dates, figs. Sesame, pumpkin, chia, sunflower seeds. Brazil's, walnuts etc etc )

Condensed milk is gluten free (but is as you say rather sweet)

How about kefir instead - lots of good bacteria instead

You have made my day !!! I honestly could not imagine my life without Nestles condensed milk. My dear mum always used to say my obsession with it was because during the war when I was born, she was rushed into hospital for several weeks, & my dad used to feed me on nestles condensed milk as it was an acceptable form of baby food back then. I find it sooooo comforting & have always turned to it when I feel poorly, To be told it is gluten free is the best news I've had for ages so a huge thank you. PS and for all the other info too.

Hi seaside girl, I would like to chime in with another piece of advise. I have Hashimotos as well- ultimately everything starts in the gut. One of the easiest things I've found is incorporating bone broth in your life. Its simple to make in a crock pot as it can cook on low all night ( or day) . Truthfully the longer it cooks the better and it has most flavor if you have some meat on the bones and after eight hours you pull the meat off to use in a salad for example. I love chicken but it can be done with beef or fish . Beef however in many people is Inflammatory.

Drinking the broth or using it to cook rice /quinoa etc is very tasty & healthful.

Best wishes 🌺😊

Thank you Boohbette. I used to do this a lot for my children in the 1960's out of necessity rather than choice, & thought those days were over, but I did read that bone broth is really good for you so it's back to the 'good old day's'. I have never tried fish broth but I shall certainly give it a go. Thank you for reminding me.

Excellent attitude!! My mother made bone broth too & who knew how well supportive it is then? Now we have that proof - realy truly- amazing & not - because as I always say to ny friends/family --- how did we all get here huh???? Yes! Old school IS finally justified - yay!😃

shaws profile image
shawsAdministrator

Tick off your clinical symptoms and look at the interpretation. I am not medically qualified.

The following is how to diagnose patients with hypo. Pity doctors only seem to look at the TSH and nothing else.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

TSH 3.62 (0.3 - 5.5)

T4 12.5 (12 - 22)

T3 4.4 (3.1 - 6.8)

Your TSH is too high but in the UK, they have deemed the number 10 for diagnosing. Any other country will diagnose when it reaches 3+.

T4 is bottom of the range and T3 is slightly higher both should be towards the upper range. See interpretation of results.

SlowDragon profile image
SlowDragonAdministrator in reply to shaws

But with high TPO antibodies too, so it would be possible for GP to prescribe, even if TSH is below 10.

It would probably have to be higher than 5.5 for GP to agree

Or FT4 below 12 (almost there)

Make sure to have plenty of exercise day/week before next blood test, to help push TSH up. Just walking is fine.

I'll talk to her about all this to so thank you.

seaside-girl profile image
seaside-girl in reply to shaws

Thank You shaws. I will definitely print that off & take it with me on my next GP appointment. It's so easy for GP's to be economic with the truth, when they know they can baffle you with science because you don't understand what they are saying, but if you can converse with them on an informed level, it makes it harder for them to fob you off. I am learning more each day as I sometimes it take a little while to sink in. Thank you

SlowDragon profile image
SlowDragonAdministrator

Bone broth

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Thank you for posting the links SlowDragon 😊

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