Hello everyone, I'm a new member and feeling totally confused and fobbed off after I begged my doctor's surgery for an emergency appointment.
I explained I didn't think I could wait the 6 weeks they offered me with a locum as I felt on deaths door! I told the receptionist that I'd paid for a private blood test that showed I had a raised TSH level and TPO antibodies. I said I had lots of symptoms and felt absolutely dreadful. It felt a bit demeaning to have to go into so much personal detail but she was really nice and said she'd ask a doctor to call (I think she remembered me from previous calls trying to find an appointment earlier in the week).
For info, my levels as per the blood test from Medichecks are: TSH 6.5, T3 4.8, T4 17.4 with TPO antibodies at 209 and TGO at 97.
For background, I have been suffering terrible symptoms for many years which I just put down to menopause and stress. All the usual suspects including sky high cholesterol 7.6, a loss of so much hair I am at my wits end and considering a wig, debilitating fatigue, aches and pains, eyes so sore and bloodshot, and brain fog is such that I'm finding it hard to remember the simplest things. Strangely I also get regular episodes where suddenly its like a mucos tap turns on in my nose and I go through nearly a box of tissues, and then after an hour it turns off again and I'm just left with a constant nasel drip. And barely sleeping at night.
But over the last couple of weeks I've felt things seem to flare up even worse, and unable to get a GP appointment, I spent £150 on a general Medichecks blood test, before realising they no longer include the thyroid, so had to by one of those too for another £90! The results came back as above and I hoped a doctor might now be able to help me.
No such luck as when the doctor finally rang, it was all a big anti-climax.
He didn't seem particular concerned about anything, even brushing over the swollen lymph nodes in my neck under my jaw. When I mentioned that yes I had been feeling down because of my symptoms, and had been getting on with life after my husband passed away two years ago, he leapt on that and said "You say getting on with life...... but what does that look like?" Eh??
Then he really started to confuse me.
He said my results didn't meet the criteria for any treatment even though I had the "slightly" raised TSH and antibodies. He didn't seem to recognise that I could have an auto-immune disease (the pre-curser to the majority of hypothyroid cases, or so I thought). I asked him how people were diagnosed with Hashimoto's for example, and he just said you have to be hypothyroid first and "youre not".
He went on that they don't usually test for antibodies. I thought to myself, so I hear...... thats why I had to pay £90 I can ill afford!
I had hoped that even if T3 & 4 were in range, at least if I did find antibodies and a raised TSH, it might serve as a heads up to start treatment early and so avoid the progressive destruction of my thyroid! Or have I completely misunderstood this whole thing?
All this Doctor left me with, aparted from a total sense of despair, was that maybe I should email my test results to my regular doctor and she may decide to 'keep an eye on it'.
Any advice would be much appreciated at this point..... How does anyone get any help? And given my numbers, am I just being a little premature, and getting ill-health ideas above my station? You? Symptoms? Computer says, NO! Who do you think you are??
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Peacefuldream
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There's plenty of heart sink doctors out there and far fewer helpful, listening GPs unfortunately. If you know one of the latter at your surgery I would approach them with your blood results and hope for better and slightly different answer.
So with antibodies you do have Hashimoto's and your TSH above range is showing that you're needing more thyroid hormone but your thryoid doesn't seem to be able to produce that. Unfortunately theres no way of stopping or slowing the destruction of the thyroid gland once this has started. As you have been unwell for a long time anyway its now well established and theres no going back.
The NHS doesn't really call Hashimoto's exactly as that. They refer to auto immune hypothyroidism or primary hypothyroidism. Patient groups refer to Hashimoto's or Hashi's. NHS doesn't recognise Thyroglobulin antibodies, just TPO's which yours are positive anyway.
GPs get very little training on all this and seem to think that we need big numbers to get any amount of symptoms which is not the case at all.
To get an NHS diagnosis and begin treatment you need 2 consecutive NHS tests with TSH above reference rnage or one above 10. So your GP should be repeating your test - book it for 9am when TSH is highest and fast from the night before. They should then repeat this every 3-4 months until you get a formal diagnosis and can begin treatment. Doctors are very hesitant and highly unlikely to begin treatment early.
Did your other Medichecks test check vitamin levels? When hypo we get low stomach acid and cant absorb vitamins well from our food, even on an excellent diet. Vitamin levels need to be OPTIMAL for us to feel well. key vitamins are ferritin, folate, B12 & D3.
As you have Hashi's you could trial a gluten free diet which helps many. Dairy is the next food that Hashi people have issues with.
I am hoping my usual doctor will be a little more proactive and helpful.
I did have a 5.4 TSH in summer of 2019, too - and foolishly didn't follow it up to retest as at the time I had no clue about any of this. I wonder if that will count as number 1?
As far as vitamins go - luckily I've always supplemented with zinc, magnesium and d3/k2. My D3 is 117 but Folate low at 4. However my ferritin and B12 always seems to come back high out of range with advice to stop supplementing - but I don't take these vitamins at all and have read that high numbers can signify some sort of inflammation.
Anyway thanks so much for the advice. I will send my tests to my doctor and see what she suggests.
So with a previous TSH above range if your next test is also above range you have a good case to begin treatment and should push for that. Remind them of that test result.
Ferritin above range can indeed indicate inflammation. Was there an inflammation marker test like ESR or CRP?
B12 above range is a little different. It can be whats called a paradoxical raised level which means you could still be suffering from low B12 symptoms. You should discuss this with your GP and ask for further testing.
Yes, Jaydee - my CRP-HS was 3.18 at end of Jan but came back down into mid-normal range when I did the latest Thyroid antibody test. So its obviously something that fluctuates.
I will follow your advice and ask my GP to repeat all my tests.
Your doctor sounds awful and if he stated "You say getting on with life...... but what does that look like?" Eh??
has an attitude and I doubt he can help many of his patients who have a dysfunctional thyroid gland. We need doctors who are aware of the different symptoms we can develop. He should also know how best to relieve them.
I have had experience when a doctor phoned to tell me that my blood tests were fine and I didn't need a prescription. I had already phoned for TSH blood test but he didn't appear to realise that my TSH was 100.
Yes I just got the impression he thought I was some kind of menopausal hyperchondriac! This is probably why I have tried my best to avoid going to the doctor for years and just suffered through rather than being made to feel I'm wasting time and resources.
The more I read these forums the more I realise that people with thyroid disorders often have a real battle, not only with the disease, but also the medical establishment.
And a TSH of 100 ! I do hope you are doing ok now.
Thanks for responding. I now know where to come if I need help understanding something.
I am fit and well and take T3 (liothyronine) it isn't a high dose but resolves unpleasant symptoms, especially when heart went mad and pulse was really racing.
My savior was Dr. John Lowe, researcher, doctor, and expert in the use of T3. He would never prescribe levothyroxine but did NDTs (natural dessicated thyroid hormones - the very original thyroid hormone replacements from 1892 and lives were saved from then on. He also prescribed T3 (liothyronine) if necessary. Unfortunately he had a very bad fall that injured his brain and caused his death.
I was also very fortunate to have a consultation with Dr Barry Peatfield and Dr Gordon Skinner - both educated upon 'how to restore health of those who were hypothyroid! Both now deceased.
I assume Big Pharma wanted to improve their profits and thus (I believe) developed levothyroixine
It's a pity that in the UK NDTs were removed by those who we would expect to be more knowledgeable - the main problem was that they probably did not have a dysfunctional thyroid gland themselves.
It's absolutely bonkers that there seems to be such a gap in knowledge of so many medical professionals these days. Even a quick 15 mins spent on you tube told me as a lay person that thyroid antibodies had some significance! So it wouldn't take much for doctors to keep up to date or dive a bit deeper into one of the most common conditions seen in their practice. No real excuse for ignorance, or lack of care. Must be one of the two!
Both Doctor Peatfield and Dr Skinner - The first thing they did was to shake my hand and welcome me to their consulting room.
They were interested in my clinical symptoms and both put me at ease. It was obvious that both doctors enjoyed listening and then suggestion what they would prescribe and patient recovered health.
Dr Peatfield resigned his Licence as he was being 'chased' for doing as he was trained,i.e. to help his patients recover and would prescribe NDTs.
Dr Skinner also saved this wife/mother from taking her own life:-
Although I'm new to the community, I can already appreciate what valuable resources this forum and Thyroiduk are. People have been so helpful and knowledgeable. Gives me hope.
Such a shame that doctors like Peatfield and Skinner seem to be the exeption rather than the norm.
I was diagnosed after a TSH 4.8 and 5.5 (range went to 4.6) , 3 months /12 weeks apart, I too put in calls saying I couldn’t cope and was really struggling. It’s good that you pushed to get an appointment.
Now you need a follow up and repeat tests.
I found seeing a stream of different locums helped. As soon as I was armed with all the knowledge I was able to ask for what I wanted, show the evidence and guidelines for treatment and they all agreed.
Then you need the NICE guidelines that state for those with autoimmune (you are) treatment needs to start and titrate up until symptoms are relieved. You will need to keep on at them.
I found Izabella Wentz books very helpful.
To get well I’ve had to alter diet and lifestyle, take oodles of supplements I was sure I didn’t need (but I do recommend it now).
Thanks some good tips here - will arm myself with the NICE guidlines for sure. And yes I must check out Izabella Wentz, too - she's popped up in my you tube feed a few times.
I still can't get my head around the fact that this doctor was basically denying that my antibody results meant I had an autoimmune disease. I think I just lacked confidence because I've only been reading up on this in detail over the past few days, so am trying to find my feet with it all.
my GP did the same, they don’t understand it. Few are familiar with more than the symptoms and diagnosis, mine was surprised when an ultrasound came back saying thyroiditis, go figure! This was after diagnosis, another scan came back saying ’poorly managed’.
I have to give her credit she’s the one that spotted I wasn’t peri menopausal at all and had been incorrectly prescribed HRT for 3 years gradually feeling worse.
Since I’ve explained everything I learned to her she’s been super helpful and listens which is a blessing.
Definitely work your way round different GPs at your surgery. Their own guide GP Online has all the autoimmune info you need (my GP doesn’t use the term Hashimoto’s).
The 2019 TSH should count as 'number 1' assuming they don't have an "in range" TSH taken since then ? ( if they do ~then 2019 is unlikely to be considered as evidence)
NHS would not usually order TPOab test until they had 2 over range TSH 's, but they do often do it at that point .
Try not to feel dejected/ fobbed off as result of being told to watch and wait for another few months .. getting a diagnosis on subclinical results does take time , there's no way round that ... but it doesn't mean you wont get one or get treated relatively soon .
(I was diagnosed and treated 20yrs ago with TSH 5.7 then 6.8 at next test with T4 still in range, and i'd been really struggling to function for 4 yrs by that point while no one thought to test thyroid ..... so i know how horrible "not very bad yet " numbers can feel for some of us ~ my stupidly high TPOab levels probably helped them decide to start levo and not fob me off any longer ... and the fact that i was only 36 so they couldn't blame menopause for my symptoms like they usually do for anyone over 44 )
These are limitations/ guidelines the NHS GP's are working to:
(sub-clinical hypothyroidism means "TSH over range while fT4 still in range" )
"1.5 Managing and monitoring subclinical hypothyroidism
Tests for people with confirmed subclinical hypothyroidism
Adults
1.5.1Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.
Treating subclinical hypothyroidism
1.5.2When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.
Adults
1.5.3Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.
1.5.4Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
If symptoms do not improve after starting levothyroxine, re-measure TSH and if the level remains raised, adjust the dose. If symptoms persist when serum TSH is within the reference range, consider stopping levothyroxine and follow the recommendations on monitoring untreated subclinical hypothyroidism and monitoring after stopping treatment."
Thank you for this great information. It will come in very handy I'm sure.
I really shouldn't be surprised at all the red tape as I spent many years advocating for my husband with doctors/consultants before he passed away. So it's not as if I'm not used to 'guidelines' and tick boxes.
Its just in my head I didn't imagine that something as prevalent in the population as thyroid disease could possibly be so fraught with complications and red tape. Lesson learnt!
Its just in my head I didn't imagine that something as prevalent in the population as thyroid disease could possibly be so fraught with complications and red tape
Unfortunately it is ……diagnosis and management of hypothyroidism, especially autoimmune thyroid disease, is little understood currently by many GP’s despite there being almost 2 million people in U.K. on levothyroxine and levothyroxine being 2nd or 3rd most prescribed medication
About 90% of primary hypothyroidism is autoimmune and about 90% of thyroid patients are female
This is an extremely busy forum as a result with over 130,000 members
ALWAYS test thyroid early morning to get highest TSH (all many medics look at)
Maintaining OPTIMAL vitamin levels to reduce symptoms
Low vitamin levels tend lower TSH
High B12 levels if you definitely aren’t taking any vitamin supplements…..can be deceiving……Paradoxical B12 deficiency
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Thank you so much for the time you've taken to help me. I really appreciate it.
I always wondered why I was high out of range for B12 and Ferritin especially as I've never supplemented either of them, or been a big meat eater. Fascinating stuff.
When I mentioned that yes I had been feeling down because of my symptoms, and had been getting on with life after my husband passed away two years ago, he leapt on that and said "You say getting on with life...... but what does that look like?"
Oh, charming. You go to the doctor with obvious hypothyroid symptoms and he leaps upon the thing that for him explains it all away. Silly you! It’s your grief giving you high antibodies, raised cholesterol and slightly out of kilter thyroid function tests. Obviously! (Not).
First of all, big hugs from a fellow youngish widow (I was 46 when my other half passed away, now 53). The thing I can categorically say is that by 2 years down the line you tend to know what’s being caused by a grief wave and what isn’t. Doh.
What is it with GPs and their dogged insistence that something can’t be a particular disorder until the magic lab results hit a magic number? As Tatty has already pointed out above, the guidance on this does quite clearly state that TSH doesn’t actually need to rise above that magical 10 if above the reference range results show up on 2 or more occasions (tick), especially when accompanied by symptoms of hypothyroidism (second tick).
I think it’s definitely worth a try to see another doctor in the practice (your usual one would be well worth a go). It’s incredibly frustrating when you know that a health issue needs looking at and you’re just fobbed off with the equivalent of “well, what do you expect given your age and circumstances?”
Hang in there. Given the antibodies, it probably is only a matter of time before you start getting the magic “TSH is over 10” results but persistence is probably going to be key here.
Patient to patient tip—TSH is highest early in the morning so when booking blood tests, try to get one for as early in the morning as you can.
I know its not personal, and we're all aware of the pressures doctors face but still...🙄.. please stop blaming real physical health concerns on the scapegoat of menopause/grief and mental health!
Thanks for the tip about the early morning testing - I'll remember that!
For the first half of my marriage I followed my husband around the British Isles as he worked on medium term contracts. I was always a bit of a ‘home bird’ so it did not altogether suit me but I discovered quickly that ‘home’ was with him - no matter how imperfect. The second half, I was left in a strange city with two children to bring up on my own, while he worked contracts overseas (retired now). I am sure this had a profound effect on me but I was already suffering hypothyroid symptoms for many years. Yes these issues have a very deep affect on us but the underpinning (hypothyroidism) does not help! A simple blood test, a bit of care on behalf of the GPs would not go amiss. My GP at the time had a great bedside manner but he left me with no diagnosis for twenty years. No help so (in my case) I stopped asking. I still do not ask for much from GPs (I know it won’t happen). I have had loads of help here. However the help here does highlight how dire the quality of our treatment actually is.
I last went to the doctor in 2019 where I had the first out of range TSH. I was suffering so many symptoms I now recognise as hypothyroid, but at the time was convinced I must have Rheumatoid Arthritis. When the blood test came back negative for those antibodies, I felt like I was wasting their time and never went back!
I’m so sorry you’re feeling so unwell, and what a dreadful response from this locum. If only he could spend a day in your shoes.
You’re above range and your antibodies are high. You should definitely contact your own GP. I was treated when only borderline high because of my antibodies.
I literally can't continue like this. so I hope my GP will respond to the email I sent soon.
The huge amount of hair loss alone gets me down as I am in a customer facing role and trying to figure out how to hide it is really ramping up the stress, too!
I didn’t really realise I wasn’t well. I was feeling washed out, but I had two small children and just attributed it to a busy life and getting older. I felt better within a week. Thankfully my GP was also hypo, so he said I may as well start treatment as it would only progress, which it did.
It was checked because I was anaemic when I went to donate blood. I had felt very washed out after the previous blood donation 6 months earlier and people commented how pale I was. I’m O negative, so they want my blood! I no longer donate, but I did for many years afterwards.
Good luck on getting some treatment. I feel for you.
I was in a similar position to you. I had some out of range tsh results which they said they would monitor yearly even though I had unxexpained chronic fatigue, hair loss, breathing problems. They never made the connection.
I started doing my own research and realised it was thyroid related. I ordered the same medichecks test as you which said I had the antibodies, tsh around 5 and low end t4 and t3.
I took it with me to my doctors appointment along with the NICE guidelines and said ‘according to these guidelines and the fact I’ve had at least two TSH out of range plus autoimmune antibodies I would like to try the levothyroxine trial please’.
Despite their previous stance, the gp read my results and agreed my thyroid was already under attack from the antibodies and as I was having symptoms it made sense to start treatment before my thyroid was completely destroyed. I couldn’t believe. It. I was totally prepared for battle!
Since then their knowledge has proven to be minimal but I do my own research and tell them what I think should happen next. All the information on here has proved invaluable and I am slowly starting to feel better.
Keep seeing different doctors until one of them takes you seriously. They only have to read their own guidelines to know what to do next! It’s not rocket science. Lots of luck to you ❤️
I feel your struggles and pains. I was hypo in 2015, but my blood test was ignored. It was lit up like a christmas tree "flagged". My cholesterol was sky high. High blood pressure. Fatty liver. Kidney issues. Beer belly. Weight gain. Acid reflux. Funny thing is my diet never changed. My gastro doctor told me to change my diet and prescribed Statins and blood pressure meds. My diet was already healthy. My TSH was flagged. Cholesterol, Vitamin D and more. I took the meds prescribed, but never got better. My ignorant life long doctor continued ignoring my screams for thyroid help. He suggested cancer. I quit taking statins against his demands. This went on for 7 years. I had to quit my job of 22 years as I became disabled. I began doctor shopping and found a doctor with 50+ years of practice. I handed him 7 years of blood tests and explained my symptoms. He looked at my labs and said " oh wow, I can clearly see the issue" and asked if I was on thyroid meds. I said no. He said well you are about to be. I broke down in tears and thanked him for opening his eyes. He said well any doctor with common sense could see I clearly had thyroid trouble. I've been on Levothyroxine for almost 1 year. I'm not 100% yet, but getting there. Be aggressive with your doctor or find another one that will listen.
Its staggering, isn't it? Its like once they pass their exams, some doctors stop taking an interest in keeping up to date with treatments that actually heal. I'm sure there are many fabulous doctors, who work really hard for their patients - but it does seem a bit luck of the draw. The doctor you eventually found sounds amazing.
Yeah. My dr is old school. No computers. I actually laughed when I first met him. No technology in his office. Hand written prescriptions and lab test requests.
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