I was told by the lovely Julie at my occupation health to come on here for some advice and support.
Around two months ago I was completely exhausted struggled to get out of bed or he awake for log periods of time. I did have any energy whatsoever. I have been loosing weight gradually over 4-6 weeks over 6KG. I thought I might of picked up something or been abit run down. After two weeks I went to the doctors and got bloods done which revealed by TSH level at 6.7mu/L with Serum free T4 level at 17.9 pmol/L and had all other bloods done which was normal and within range, only very high vitamin b12. I was told this wasn't serious enough for any treatment. A week later I was feeling more fatigued , I normally go the gym 4-5 times a week and very active person, which I've not been able to do since, and become very anxious couldn't concentrate and all my body was aching. I rang up the doctors and got told I need medication for the anxiety I was experiencing after researching around the condition I then asked for thyroid antibioties blood test which resulted- thyroid peroxidase- 394 kIU/L. I was told this was slight raised but no need for concern. I have been back the doctors a number of times with my symptoms now am absolutely freezing can't get warm, have not been to work for over two months, my mood has really went down and my sex drive this is completely non existent whichever is staining my relationship. I have been the doctors 1 week ago with the right side of my neck being swollen which I am waiting for ultrasound now which has a few weeks wait, on this appointment I was prescribed anti-depressants to increase my energy levels. I just don't feel like I am getting listened too and I feel like I am getting made out to be a complete psychopath. I am 29 never had any other problems or needed to go the doctors and the minute I need some help I get treated like this.
I have now been told to wait until January for a repeat blood test, my mum, auntie and nan all had thyroid problems.
Any advice would be appreciated I feel like I am going insane.
Thank you
Jeanette
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Jeanette56
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Push back at that GPof yours. You clearly have autoimmune hypothyroidism. It is cruel to make you wait any longer. I bet you feel dreadful. Use the info in the pinned posts to show your GP what the NICE guidelines are. Be kind to yourself while you wait and start treatment it’s a long road to feeling improvement and active again 🌱
It really has been so hard and also have a child to look after with very little support. I did look through the NICE guidelines which does say repeat in 3 months but the symptoms I am having is just awful. Thank you I will have a look at the pinned post. Really appreciate your reply.
Welcome to the forum and well done lovely Julie at occupation health for recommending you come along here
Your high thyroid antibodies confirms autoimmune thyroid disease also called Hashimoto’s
Hashimoto’s frequently starts with transient hyperthyroid results and symptoms (eg weight loss) as thyroid cells break down releasing excess thyroid hormones. It’s not true hyperthyroidism, and can rapidly swing to hypo
symptoms now am absolutely freezing can't get warm, have not been to work for over two months, my mood has really went down and my sex drive this is completely non existent
all hypo symptoms
Is your GP aware of close family members all having autoimmune thyroid disease?
Request another test NOW …..or test privately
ALWAYS make sure to test early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
NHS won’t treat until 2 blood tests with TSH over 5
This blood test was done beginning of October and the DR told me yesterday that I have to wait for three months so beginning of January. I don't have the money to go private for the treatment I am single parent and now off sick with this.
I did get vitamin D I will ask for this.
Folate- 11.7 ug/L
Ferrin- 32 ug/L
Vb12-891 ng/L.
I have to wait now until 5th of December for my ultrasound.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Vitamin D
Are you currently taking any vitamin D supplement?
If yes how much
Request GP test vitamin D as low vitamin D is strongly linked to autoimmune thyroid disease
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
Vitamin D insufficiency was associated with AITD and HT, especially overt hypothyroidism. Low serum vitamin D levels were independently associated with high serum TSH levels.
The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.
Our results indicated that patients with hypothyroidism suffered from hypovitaminosis D with hypocalcaemia that is significantly associated with the degree and severity of the hypothyroidism. That encourages the advisability of vit D supplementation and recommends the screening for Vitamin D deficiency and serum calcium levels for all hypothyroid patients.
thank you so much for all that information I will have a look through, I know I just feel like I am getting worse now and really feel down about it and don't have the funds to go private otherwise I would xx
“NHS won’t treat until two blood tests with TSH over 5”
Huh? I wish! It’s 5.5 where I live. I had two come in over 5, one at a private clinic admittedly, and another two weeks later requested by my GP. The first one came back at 5.6 (upper normal limit 4.2) the second came back at 5.42 (upper normal limit 5.5) As everything else has come back in the “normal” range I got the distinct impression that was it as far as the NHS is concerned. Certainly it’s not been suggested that I should be retested in a few months time. This site (and you) have recommended that I should do that and I rather suspect I’ll be doing so privately.
as discussed in your previous post 3 months ago TSH will quite likely be lower than should be for such low Ft4 and Ft3 due to long term steroid use in asthma inhaler
Same time as the above, except for vitamin D which was last tested in April. All were in normal range but folate and vit D weren’t in by very much. Ferritin was on the low side, but not too bad, B12 looked OK. I’m working on improving all of them (mixture of supplements and diet - although the latter is really pretty good anyway and that’s not just my opinion:-)). I will certainly be asking for all of them to be rechecked come the New Year to see how things are going with them.
At the moment I’m awaiting testing for coeliac disease. Unfortunately I decided to come off gluten for a few days whilst away three weeks ago (I had been having a pretty difficult time with loose bowel motions - extremely unusual for me I might add; I have a very long history of constipation). I wondered whether gluten might be responsible after overindulging a bit on pastries and biscuits resulted in a rather bad bout of it. When I got back a GP agreed that testing for coeliac might be a good idea, but unfortunately because I had those few days off gluten I had to reset the gluten clock for six weeks of daily intake of the stuff. That blood test is now due to happen just before Christmas.
Chances are if you get a 9am appointment for your next blood test it could well be that your TSH is already above the 'magic' 10 so they shouldn't mess you about any more and will get you started on Levothyroxine.... absolutely no reason you should have to go private at this stage and then at least you will qualify for medical exemption which means free prescriptions
Explain to them that you have been advised by Thyroid UK that 6 weeks is adequate between tests... you might have to puff yourself up have a little practice in the mirror.... be calm, polite but firm 🤗
You could put the request in via there website contact link if they have one?
I will ring up again on Monday and will say that thank you very much. I know I am confident normally but it's hard when you're made to feel stupid so tend to go with what you're being told by the dr. I would need a telephone consultation for the bloods to be agreed I will ring on Monday and speak with them. Thank you so much for replying x
Being Hypo really knock your confidence on top of everything else 😕 but once you realise that the Dr's really haven't much of a clue generally about thyroid issues you learn to guide them 😁
I was subclinical for years with terrible symptoms including history of vitamin deficiency and a parent with Graves’ disease. My periods stopped (I’m 37) and was on the cusp of starting hormone replacement. Despite my thyroid being subclinical through out they didn’t associate my problems with hormones to this. I had a feeling of needing to school myself up about thyroid (mostly because of my Mum’s condition) and came here. I paid for private blood tests which included TPO’s presented to docs with the symptom checker from this website. She immediately agreed to start me on thyroid replacement. (FYI my numbers weren’t as high as yours) Surprise surprise my periods have returned and my tsh hormone levels are in range now. I don’t feel like I am 💯 now and still have ‘bad’ days. Pretty sure I’m not on enough thyroxine as she prescribed 25 (although I’m taking 50). Again didn’t realise this was against guidance. I really do think you need to go in and tell them what you need because all I have had is incompetence from my Dr and yours sounds worse!
I’m so sorry to hear your story, I got diagnosed with Hashimotos 3 years ago but it was long battle which took its toll on my mental health.
My first test was out of range like yours but my 2nd was within and the GP made me feel like I was insane, telling me my symptoms weren’t related to thyroid problems. They even tried to diagnose me with fibromyalgia!
Once you are diagnosed you get free prescriptions for life so I feel everything they can to prolong that diagnosis.
I was actually trying for a baby and struggling to conceive/having miscarriages which is what made them take me seriously in the end as your TSH needs to be under 2.
I spoke to a private doctor on the phone but he wasn’t any quicker with the diagnosis. I eventually got diagnosed by a fertility clinic who took my bloods and my TSH was 42! So the TSH fluctuates all the time.
I really hope you get sometime to take you seriously soon. Unfortunately you really have to push hard and find loopholes in the system like I did. All the best x
Hi Jeanette, your story sounds very similar to mine (without the weight loss - I had weight gain). I ended up going private because my doctors knew nothing about Hashimoto’s/Hypothyroidism, how to treat it and would not do their job and research the condition. You have definitely come to the right place! Stand firm with your GP but be prepared to go private if you need to. Hopefully you won’t, but your health and wellbeing need to be your priority. My GPS refused to treat my condition adequately but my private consultant put them in their place. I am now on the right treatment and am feeling the best I’ve felt in 6 years. As well as all the fabulous advice you have been given here, there are a plethora of helpful videos on YouTube with Doctors (mostly American) who specialise in Thyroid disorders.
For a long time my doctors kept telling me I was subclinical even though I was listing symptoms and my TPO was way out of range. They have always said that I had an elevated auto immune system but never offered any sort of treatment. I remember a doctor ringing me to tell me that my latest blood test results were "normal" while I was in a supermarket. I was stood next to the milk, crying through frustration telling her all of my symptoms again and she reluctantly agreed to put me on 25 mg of Levothyroxine. When my symptoms worsened they wanted to increase my antidepressants but I said no, its not that, its my thyroid. I asked to increase my Levothyroxine and they put it up to 50mg which even though its a piddling amount still made a difference.
So sorry to a hear of the situation you find yourself in. I went through something simular 20yrs ago and was given a CFS/ME label which I didn't have! I'm afraid you will have to push your doctors for that 2nd blood test ASAP done first thing fasting. Being a single parent with a child to look after is no fun when poorly and being left by your doctor not treated is outrageous tbh. You don't say whether you are getting any sick pay.
GPs are generally not very knowledgeable over Hypothyroidism. They go by what the labs say and pathways on their screens. Are usually not familiar with signs and symptoms of Hypothyroidism even though it is a fairly common condition. I had one GP tell me recently "that signs and symptoms are 'old medicine' These days we go on blood tests and scans!!! " So shocking.
So you, am afraid, when you feel sooo poorly need to become a patient expert so you effectively can politely direct the doctors and stand up to their bull. Thyroid UK have library of books. I would ask if you could borrow ' Living with my Thyroid' by Barry Durrant Peatfield. It was written by a renowned doctor who treated many patients let down by the NHS. Sadly he passed not long ago.
When you book your next appointment if you can face to face, take a good friend, family member who has Hashi with you. Doctors tend to listen better when patients are accompanied. Sad fact!
Always get copies or download copy of your blood test results from NHS app.
Ask for a trial of Levothyroxine of 50mcg. Point out all your signs and symptoms are typical of Hypothyroidism & list them. Point out the family history. Draw their attention to your blood test results which support that you too have developed Hypothyroidism (High TSH, High level of antibodies) . It really is pointless making you wait so you become more ill with a longer pathway back to health. You are a single parent and you need your job. You want to work but are physically too ill due to your condition not being treated.
(The government are now worried about the number of people on sick leave so hopefully your GP will listen).
Really important to take someone with you. Ideally a family member with diagnosed Hashi (to doctors Hypothyroidism) as they will know the score and can point out the family history.
This should be enough to sway them to give you a trial of levothyroxine.
Reassure yourself that all your symptoms can be resolved with treatment but I'm afraid it's not necessarily a quick fix.
Keep. Posting on here where you will get very good advice.
Has your cortisol been tested? Have a 9am test. You could order a 4 or 6 point saliva test and do it yourself. If cortisol is OK maybe look to iherb to order yourself something natural. Or seek guidance from a thyroid specialist.
As mentioned get tested for celiac and then go gluten free.
You need plenty of sea salt, b2, b3,b1, magnesium and vit with it. Selenium is necessary but too high made my hair drop possibly so this should be checked.
If your b12 is high you may have the mthr gene mutation so also may not process selenium well.
So sorry to read your plight but at least you are getting great advice and support here and you will never walk this health path alone again.
Trust your instincts and push for those blood tests as soon as possible. Could you try another GP in the practice. My hubby just been diagnosed and we are trying to get beyond the wait and see phase too but fortunately he doesn’t have the symptoms you have.
Try to keep a diary of symptoms and as someone said earlier be kind to yourself and rest as much as possible although I can imagine you smiling wryly when you have a child. But prioritise what must be vs what could be done so you do get some respite.
Iodine maybe low! Might be a Reverse T3 issue. Be sure before you get on the "Thyroid Roller Coaster Syndrome" . Get rid of soy from your diet agutstygirl.com good resource to let you know the many names for soy like 75+
Jeanette, I am so sorry to hear the struggle you are having with your uncaring and ill-informed GP. Like you I was off work for 5 months before I got some help. I can’t add anything more to the excellent advice that other posters have already given you. Believe us when we say with the correct treatment you will get better. Sending hugs and sympathy.🥰🥰. Well done health advisor Julie👏
Hi Jeanette, just to say I know how you are feeling. I was messaed about and made to look like a hypochondriac, but my advice to you is be your own advocate. Learn the methods, tips and tests results suggested to check all your levels. GPs havnt a clue about thyroid symptoms etc and endocrinologists are not much better in my experience. Thyroid UK has lots of info to take with you to the GP if necessary. I struggled for yrs but there wasnt internet back then. Antidepressant just made things a whole lot worse for me to point of almost giving up. Its not in your head. Give Julie a pat on the back in showing you the right door. There are lots in the same boat and we are here to support each other. Goodluck and keep going til you get answers. Even suggest a trial of thyroxine? I wish you well.
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