I am new. I feel like giving up. I was diagnosed hypothyroid in 2012 and I take 150mcg Levothyroxine. My GP orders blood tests for all sorts of things but I get no call back so I must be in perfect health. I will just keep taking my Levothyroxine like my endo has instructed me to and get on with my life despite my debilitating symptoms, please see below list:
Swollen neck
Dry eyes
Dry nose
Dry skin
Cramps in legs
Memory loss
Dizziness
Ears ringing
Periods draining the life out of me
Tiredness
Feeling breathless
Constipation
Feeling cold
Toes feeling numb
Nails looking flaky and pink nail plates splitting
I don't expect anyone to reply. I don't expect anyone to relate to me either. I am just writing to say that I feel alone and I probably am alone. I also have iron deficiency which is untreated, folate deficiency, low B12 and vitamin D deficiency.
The GP receptionist says my TSH is over range but my thyroid hormones are normal which is what the GPs go by.
Dec 2017
TSH 4.88 (0.2 - 4.2)
Free T4 14.8 (12 - 22)
Free T3 3.4 (3.1 - 6.8)
Thyroid peroxidase antibodies 904.5 (<34)
Thyroglobulin antibodies 4000 (<115)
Ferritin 22 (15 - 150)
Folate 2.1 (2.5 - 19.5)
Vitamin B12 233 (190 - 900)
Vitamin D 60.2 (50 - 75 suboptimal. Advise on safe sun exposure and diet)
Iron stopped in 2016, folic acid started Jan 2018, B12 started Jan 2018, vitamin D 9000IU with K2-MK7 (oral spray) started Sep 2017.
Thank you
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Shanza1
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So now Dr. receptionists have medical degrees!! They are there to answer the phone, make appointments and give out prescriptions.....NOT to comment on any results your GP has requested......it makes me so angry!
I agree. I phoned about ears ringing which I know is or can be a symptom of hypo and she tells me..."there's no cure for that I will give you a routine appt" so i guess they're now using qualified doctors in the surgeries to make appts
Normal!!!! Is the receptionist qualified? Endocrinologist? and even they don't actually know how to diagnose results of blood tests.
Why hasn't your doctor increased your dose, so that your actual T3 is nearer the top of the range.
T4 is an inactive hormone and it's job is to convert to the ACTIVE thyroid hormone - the T3 (liothyronine) and it is T3 which is required in our millions of T3 receptor cells. Yours is at the bottom of the range and the reason why you don't feel well as you don't have sufficient to run your whole metabolism, i.e. brain and heart need the most T3.
The fact that your TSH is 1 or lower is also another factor for you feeling ill.
Is your receptionist a qualified doctor, I don't think so, please don't let her comment on your health.
I only got better by giving up the doctor and having private blood tests. then posting them on here for answers it took 18 months but now after following all the good advice I am well again and feeling great.
My GP only goes off the TSH level. He doesn’t get all the results you have had. Your TSH is high so try taking your meds at a different time and always on an empty stomach with nothing but water for 2 hours. I now take mine on my early morning toilet visit which is usually around 5am then I go back to bed for an hour or two. I feel so much better since I began this routine.
You are most certainly not alone! Have a read through some of today's other posts and you will realise that we all have a reason to be here.
On Monday, get in touch with your GP's surgery and get a print out of your test results. Post them here, and members will have a look at them and suggest what you could do to start feeling better.
Sadly lots of GPs do not have great thyroid knowledge, so do not assume everything is as good as it can be. There is always room for improvement!
Stuff the receptionist. You need an immediate 25mcg increase in levo as your thyroid hormones will *still* be normal when Ft4 is 22 and Ft3 is 6.8, and your TSH is 0.2! Ansd get a copy of the Dr Toft Pulse article to show your GP (and the know-all receptionist).
I would suggest reading Stop the Thyroid Madness. The levothyroxine T4 therapy does not solve your Thyroid issues, the side effects of the medication are as bad as the condition. Join Fb groups for ndt and STTM there is lots of advice on how to get the best medication for you, you might end up treating yourself if the Dr doesn't "get it".. You are definitely not alone, there are thousands of woman in your shoes who are being misdiagnosed and mis-treated .
The GP receptionist I spoke to made me feel like a hypochondriac. She told me that with a high TSH and normal thyroid hormone levels I did not require Levothyroxine. I spent a good 3-4 minutes trying to explain to her that I was prescribed it for hypothyroidism and she told me my levels clearly indicate I do not need it! Was going so red in the face that in the end I got in touch with my endocrinologist and told him what the receptionist said. He said he will put a stop to this.
I was taking 150mcg at the time, yes. My endo has said my thyroid levels are not following a typical steady pattern on the 150mcg dose and he wants me to stay on it until they do hold steady.
Yes that was what he said. He told me over the phone he had never seen anything like it before and he doesn't understand how my levels could go up and down so much within 6-8 weeks with no change in dose.
Possibly. I was transferred to this one by default; my previous one in Bristol went on maternity leave so I was originally transferred to Cardiff hospital, was told to expect a 6 month wait. By the time my appointment with the endo in Cardiff came I was transferred back to Bristol and given this guy.
About 90% of people with hypothyroidism in the UK have it because of antibodies destroying their thyroid i.e. they have autoimmune hypothyroidism (also known as Hashimoto's Thyroiditis).
Any endo who claims to have never seen results which fluctuate a lot is either lying, unobservant, has a dodgy memory, or hardly ever sees patients with hypothyroidism.
Yes, next time you do a post it would be helpful if you gave all information in the original post:
Include dates of tests, numbers , ranges and any comments by lab or GP. Also mention new prescription such have as increasea /decrease in dose of Levothyroxine and details of injections and/or supplements tablets with dosage.
I have given all information about thyroid results. I did not realise the importance of vitamin and mineral levels and I was not told of the importance of the antibody levels. Thanks
Don't discuss your health with that receptionist again. You do not have to speak to a receptionist about your treatment or explain your clinical needs to them.
Ask your Endocrinologist to post you a prescription or arrange for you to collect one from his secretary.
By the way your TSH needs to be kept under 2 (not within "normal range"). Most on here say less than one.
Your FreeT4 and FreeT3 are too low.
Your TSH needs to be brought lower to also protect your Pituitary Gland from overworking by producing so much TSH.
Thank you, I will no longer discuss my health with that receptionist again. My endo would like my TSH kept at 2 or below and thyroid hormones within the upper part of normal
Unfortunately because of the fluctuating results the endo will not increase my dosage. I did not tell him of my symptoms because when I was undermedicated before I told him off my symptoms and he cut me off saying he wasn't interested in what hypothyroid symptoms I had as he was more interested in what symptoms I would have when I get a TSH of 2 or below and thyroid hormones in the upper parts of their ranges.
At that time I was taking 100mcg Levothyroxine, advised by my GP to reduce from 175mcg Levothyroxine without my endo's involvement. I take my Levothyroxine on its own with just water and I leave 1-2 hours before breakfast and vitamins 4 hours after.
She has a damned cheek. I know the NHS is running out of money but with Receptionists like that I would complain that you have been kept unwell due to not being given an optimum of thyroid hormones to bring your TSH to 1 or lower. A TSH above the top of the range is not OPTIMAL dosing.
You are not alone. I sympathize with you as I have suffered for years with hypothyroidism. You just need to get the right level of medication to feel better. This forum is absolutely amazing. The help and support that I have been given here is incredible and has given me the information I need to go back to my GP and stand my ground. All the best.
Well it sounds like your Endocrinologist knows more than your Dr's receptionist... which is the right way round. It doesn't matter what the receptionist thinks, she has no medical training. You may as well worry about what a bus driver thinks! If she continues to give you a hard time write a letter of complaint to the practice manager. A receptionist is not employed to be rude, or give inaccurate information.
Your TSH is still too high, and your freeT4 and freeT3 are still low in range with plenty of room for improvement on all fronts. If you are on Levo, the aim is to get your TSH to roughly under 1.
I believe I need T3 but my current endo has refused to prescribe it despite my GP and an endocrine multidisciplinary team saying I have a clinical need for it. Whether my endo is right or not I don't know, I just feel so confused about what to do about how to stabilise my thyroid levels.
The fact that a "endocrine multidisciplinary team saying I have a clinical need for it" (i.e. T3 - you are entitled to have it prescribed). Put up a good case and demand that you are given T3 along with T4.
Another new Research Team have also confirmed that most need T4/T3 combination to feel well.
! Looks like autoimmune thyroiditis, also called Hashimotos. That is the most common reason for having an underactive thyroid, so welcome to a big club. You need to try and get those antibodies down, I'm sure plenty of advice will be coming in your direction shortly.
I hope so, I just don't know how long it will all take. I want to introduce magnesium and selenium and a B complex but no idea if I need to. I don't want to sound like a walking medicine cabinet.
What strength of Selenium are you considering? Care is needed to not take too much. Some sites say to only take 2 Brazil Nuts. As apparently to say a Brazil Nut contains 50mcg of Selenium isn't necessarily correct because they vary so much in size. There is also some Selenium in othere foods such as eggs and Bananas.
Also, the endo is only giving me phone appointments and not appointments to come into clinic. He has said he will keep me on his clinic list for 12 months (this was said in November 2017) and if I need to be seen any sooner I can call the appointments line for a follow-up in clinic.
After the palaver with the GP receptionist who was giving me medical advice about my thyroid results I contacted the appointments line to ask to be seen back in endocrine clinic. I was advised to call the endo direct and upon doing so was offered a phone appointment.
Do I need to be critically ill to be seen in clinic? I don't know how it works. Sorry for the rant but I don't understand why the endo would invite me back into clinic when he keeps giving me phone appointments instead. Maybe I'm seen as a problem patient?
It seems that as far as endocrinologists are concerned, all thyroid patients are problem patients and if they can fob us off, get rid of us, put us on anti-depressants or make us think we are mad or hypochondriac they will. Mainly they are diabetic specialists and have no up to date training in anything thyroid related it seems. Google your Endo and find out if he's a diabetic specialist or a thyroid specialist.
Your not alone in feeling how you do, hence why there are posts daily on here just like yours.
This forum is fantastic at supporting us and offering advice.
I’ve got Hashimoto’s too, don’t rely on your GP or your Endocrinologist to help, they all seem to be relying on guidelines which are out of date despite patients feeling so ill.
This was a very expensive lesson I have recently learnt.
Don’t let them label you with depression or anxiety or fob your off with antidepressants.
They tried that we me, but, I refused them and informed them I was depressed due to Hashimoto’s symptoms, and if they felt like I did, they would be depressed too.
As for the receptionist, someone has already pointed out they are not medically trained to give you any advice or to decide when and if you get to see a doctor.
I have learnt from this forum far more information than my what my private Endocrinologist offered.
It is important to make sure all your vitamin levels are correct to help your condition.
Vitamin D
Iron
B12
Vitamin C
Due to the incompetence of my private Endocrinologist whom refused to prescribe any medication, despite confirming I have Hashimoto’s, I have taken the decision to self medicate.
Awaiting the medication to arrive.
With Hashimoto’s it is advised you go gluten free. This has really helped me (some find it doesn’t help) and I’ve given up the fizzy drinks too.
Try to avoid high sugar foods as well.
I also take 200mg of selenium a day which I believe really helps
Considering that there are 2.2 million people in the UK on Thyroid replacement hormone and 90% have Hashimoto's it would be nice to find an endocrinologist who has some idea of how to treat
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne: tukadmin@thyroiduk.org
Prof Toft - article just published now saying T3 is likely essential for many
Hi not sure if anyone has mentioned that your GP and receptionist are idiots? TSH is far too high and under NICE guidelines (I’ll find a link and post) once on medication if should be lower than 2.5. There is a great response to another post today by Clutter who also sets out Dr Tofts guidance on TSH. You need a dose increase and lower TSH and higher T4. Agree with the comments about not talking to receptionists about health care regardless of how well informed they may be. Good luck!
Just to be absolutely clear - what you have linked is a whole series of Clinical Knowledge Summaries. They were inherited by NICE and moved to their website. NICE seem to be responsible for them. However, they do NOT constitute formal NICE guidelines.
NICE are in the process of developing full guidelines.
Hi, Sorry you are feeling so unwell. Just a couple of points I'd like to raise.
When you take your thyroxine do you leave at least an hour before you eat or drink?
Have you cut down on pulses and oats? I've found too much roughage can strip my thyroxine out leaving me feeling unwell.
If you take vitamin D do you ensure that it is D3?
Cut out all sugar. Sugar and stress are the biggest no nos for me. It exacerbates my symptoms.
Write to the practice manager and make a formal complaint about the receptionist. Unless they are a qualified doctor in their own right they have no right to tell you what is wrong or right with you. I had the same and once I complained I was treated properly.
I hope you find relief soon. You are NOT alone. We have all been where you are now and you WILL get through it x
Thyroxine absorption can he hampered by too much fibre. By all means have oats but they are better taken later in the day.
Consumption of certain foods may affect levothyroxine absorption thereby necessitating adjustments in dosing. Soybean flour, cotton seed meal, walnuts, and dietary fiber may bind and decrease the absorption of levothyroxine sodium from the GI tract
Why should you give up on you? even if everyone else seems to want to. You are valued you are just very unwell. This is going to be a long and at times difficult journey. Take all the advice you can from this wonderful community allow yourself to be supported by us all. Oh and tell people who step over the mark i.e. receptionists that you don't need their opinion you just need them to do their job. Politely of course and with a sweet smile on your face!
I no just how you feel so don't think your alone. Every time l start to feel better my hair feels nice my nails start to grow my symptoms seem to be gradually getting better then bang I'm back to square one again.
What l would like to know is who desides what the range of blood levels should be?? Just because are level is with in the so could guideline it doesn't mean that's where it should be. Perhaps some of us with hypothyroidism need to be at a higher level than the so called guidelines. And people with hyperthyroidism in a low than the normal level.
Surely we should be treated as individuals and be prescribed the dose we need to feel better not when a blood test looks "normal". Sorry for the rant and taken over you post.
Your message makes me very angry! First, the doctor should have got back to you about your results. Second, the receptionist should not be interpreting them for you. Third, you sound extremely depressed, and that is a major symptom of thyroid deficiency! Please, get back to your doctor and ask to be referred to a specialist, and don't be put off by anyone assuming you are a hypochondriac! (At one time, thyroxine was used as a slimming aid, and some medical people who should know better still think those who want it, or ask for their dose to be upped, are fatties who are too lazy to diet or exercise properly!)
Hi as everyone has said you are not alone. Battling with the GP over medication for hypothyroidism has frustrated me for years. Even after I saw a consultant endocrinologist they still queried my levels! The receptionist is not qualified to make a diagnosis and if you have no joy with the GP ask for a referral to see an endocrinologist. If your TSH is raised as your levels show , it is indicating that your thyroid is not producing enough thyroxine and the Pituitary gland is producing more TSH to try and stimulate the thyroid into action. The consultant pointed out to me that the levels deemed normal are based on someone without thyroid disorder. Normal differs between individual sufferers and the replacement provided by Levothyroxine is not as efficient as that produced naturally in the body. Therefore it is very likely that some of us need high doses of the drug to maintain us at a satisfactory level. I function best with a Free T4 of between 21 and 24 so it is likely with your raised TSH that you need more Levothyroxine. I currently take 200 mcg but have been on a higher dose. I’m about to request another blood test as my free T4 had dropped to 20 when it was last tested and I believe it’s probably lower now. If my suspicions are correct I shall bypass the GP and make contact with the consultant as I’m not prepared for another battle. GP’s ( in my experience) don’t always appreciate their patients having some knowledge about their condition . I’m not sure how old you are or if male or female but there are other things that can produce similar symptoms e.g menopause. The combination of the two is not helpful! In conclusion , see your GP and ask for a referral because you cannot carry on the way you are. Good Luck!
I can relate everything you've wrote as sure every thyroid patient can at some point in their lives. I'm not the best to advise on bloods but it does appear that your under treated and vitamin deficient.
I know how frustrating it can be when your getting anywhere with GP's.
Why don't you start by booking a DR appointment and you just can't carry on like this.
My DR prescribed Vit D and iron and increased Levo medication and I'm very bright and have energy now.
But I'm still having thyroid problems so it's not straightforward to treat.
Hello Shanza1. No matter how much you don’t expect anyone to relate to you, believe me everyone on this site will. You will receive loads of help from the brilliant people on here, as did I. I’ve never looked back since finding this website and am extremely grateful for all the help I’ve gotten from it.
you may need a diff thyroid. i tried that and it never helped a thing. i now take armour thyroid or naturthroid and now i can get out of bed easier you need tests for free 3 and your free4 thyroid in your blood
Don't give up!!! Thyroid disease is a lifetime problem. Be patient 😀
Do I take it from the excessive use of the question mark you don't understand my last post?
The original post was regarding someone else and their experience. I'm happy that you seem to have no ill effects with regard to your diet but this post isn't about you.
If you are interested in the effects that some substances that have an negative effect on the absorption of thyroxine then a quick search will bring up a variety.
You must ring surgery to check when bloods come back. Even if they say in range no further action book appointement with your doctor to discuss. Tell him you want to up your dose.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Was going so red in the face that in the end I got in touch with my endocrinologist and told him what the receptionist said. He said he will put a stop to this.
Either that or he's ignorant.
Hi
feel so hopeless
Hi there
