I was officially diagnosed with Hashimoto’s last week but I was diagnosed hypothyroid in May 2013.
I was thinking about stopping my thyroxine. The reasons for this are:
* The TSH went down on its own from 4.6 to 2.7. (0.27-4.2)
* The GP cannot feel for a nodule/goitre whenever I say I can feel one.
* I have been getting a few thyroid flares even on a dose of 125mcg.
* I’m worried the ACTH result will be affected by the thyroxine.
* I don’t feel any better on the thyroxine dose I am on.
* Some people have accused me of being a hypochondriac.
Blood test results are:
Jan 2013
Anti-TPO – 84,000 (<34)
TSH: 0.69 (0.27-4.2)
May 2013
TSH: 22 (0.27-4.2)
FT4: 10.9 (12-22)
Started on thyroxine on the following doses:
25mcg – 2 weeks
50mcg – 2 weeks
75mcg 3 months onwards
Aug 2013
TSH: 4 (0.27-4.2)
Thyroxine moved up to 125mcg
Nov 2013
TSH: 4.3 (0.27-4.2)
FT4: 15.3 (12-22)
FT3: 5.5 (3.1-6.8)
Thyroxine moved up to 150mcg
Dec 2013
Anti-TPO: 41,000 (<34)
TSH: 4.6 (0.27-4.2)
FT4: 15.6 (12-22)
Thyroxine not increased.
I don’t want to stop my meds and I’ve been getting more symptoms lately, but I’ve been wronged so many times by my last practice that everything is making me feel I should give up. I’m also very surprised my TSH went down since I’ve been feeling so bad and I can’t even understand why my endo didn’t even examine my neck when the letter I had stated she would.
my dr didn't examine front of my neck and only said my glands weren't up btu I feel taht hes just saying that .I have enlarged larynx and thyroid and lump under my jaw and he didnt feel them.my TSH was 3.32 if I remember correctly.he didn't test T3 or T4?dont know what these are?
Have you had an MRI of the head/neck done at all? I did and although mine was pretty much normal they noted I had enlarged tonsils. Apparently though it didn't seem to be much of a concern to them.
I have a lump under my jaw, one each side too but GP doesn't detect them when they examine my neck. They're not a problem to me anyway as they don't hurt or do anything.
T3 and T4 are two of the hormones your thyroid makes in response to the TSH (from what my GP has told me). These can be measured in a blood test but if your doctor has not tested you for these ask him to do so and post your results up once you get them.
There are lymph nodes either side of your neck under your jaw. Is it possible these are what you feel Jo? These can become enlarged and even sore if you are fighting an infection. (Get very swollen with mumps for instance)
Have you had your ferritin (hugely important with hashi) tested? It should be around 70 for t4 to convert to t3 effectively. Also, vit d and B12 should be tested. As another 'hypochondriac' I have always taken a good vit supp and was amazed to discover my vit d was low even by nhs standards. I also take selenium 200mg which has been shown to greatly reduce antibodies. Over the years of being on this site and others I have learnt a lot about hashi. I am now gluten free and always feel better if I follow a mostly paleo diet and stay off the sauce!! Difficult at Christmas! You could try the AIP (autoimmune paleo) diet for a few weeks and see how you feel. It works miracles with many, many hashi people. No GP I have ever met knows about how effective diet is with hashi. Many endos don't either. Your anti bodies are attacking your thyroid and destroying it. I wouldn't stop your meds but a hashi friendly lifestyle often means you can reduce them. Best of luck. X
Yes, I've had my ferritin tested. It's currently 22 (30-400) but it's always been very low even when I wasn't diagnosed hypothyroid/Hashi's.
I tried some gluten-free bread yesterday and the first time I ate it my tummy was a bit odd - I had a bowel movement straight away - but the second time I ate it there were no problems. I'm wondering if going gluten-free would help.
AIP diet sounds good - thanks for the tip. I'll google that when I have time later.
The antibodies seem to go down when the TSH is high. Not sure if it's relevant though.
Hi, yes hypohen I have booked an appointment with a GP today. I had it moved as I had to spend all day yesterday at home. I haven't yet stopped my meds as I feel they should really know about it.
I was wondering why it is vital for ferritin to be at least 70? My last blood test showed mine to be 169! Is that too high and what effect does it have being too high? Just wondering.
Karisma don't stop taking your meds until you have a word with your doctor and see if there's anything she can do.
Hi JanW, I don't know what more my GP can do really. When I explained to another GP at the practice that the 75mcg didn't make me feel any better despite the TSH going from 22 to 4 he didn't say anything to my reply. I'm starting to feel that I don't trust them 100% now.
Karisma853. Yes I know exactly how you feel I often wonder if thyroxine is doing me any good I've been on it for years often/usually fatigued. To be honest I think everyone with thyroid problems gets fobbed off by doctors. I've wondered myself about T3 but wouldn't know how much to use as I've heard it's strong. I've just started reading a book called: Recovering with T3 by doctor John C. Lowe. He's not a doctor - an advantage I think! Seems to know what he's talking about. It's a good idea to arm yourself with a few books on your health issues as from 15 years experience you won't get much help from doctors, unless they are specialists not a clue. Fraid when you get thyroid problems you get a bit cynical then you have to try and help yourself but it's a bit of a minefield - should I do this - should I do that.
Yes, I'm starting to find it's a minefield now. If I do more research, take notes of this and then take them to appointments is it likely the GP will take more notice about what I say? Just a thought, really.
I am a novice at levels since thyroxine seems to sort me out very well, however I find it quite shocking that your TSH should go from 4.6 to 0.69 in the course of a month with no change in your thyroxine - or have I read that wrong?
With the trend of your TSH getting higher and still feeling rough I would wonder if they've mixed your results up with someone else? It seems a bit odd! Perhaps as someone else said, your thyroid is undergoing big fluctuating changes.
The only examination of my neck was an ultrasound scan which showed that I had nodules on my thyroid.(I have Hashimotos ) I had had a swallowing problem (which I now think is an allergy), and that may have been another reason why they scanned me.
I don't think I would stop my medication. I think I would go back to them and say you still feel rubbish, explain your symptoms, and ask if there is anything they can do to help you, ...oh and by the way it couldn't be possible that they got mixed up, could it??
FT4: 10.9 (12-22) - started the thyroxine at 25, 50 and then 75mcg
August 2013
TSH: 4 (0.27-4.2) - thyroxine increased to 125mcg
November 2013
TSH: 4.3 (0.27-4.2)
FT4: 15.3 (12-22) - thyroxine increased to 150mcg
December 2013
TSH: 4.6 (0.27-4.2)
FT4: 15.6 (12-22) - thyroxine not changed
Anti-TPO: 41,000 (<34)
January 2014
TSH: 2.7 (0.27-4.2)
I don't know what my doctor can do for me now even though I see her later today and I don't see my endo until 15th April. But because of the nodule/goitre I think I may have, I've put a letter together and sending it to her as the secretary did not reply to my email.
Some doctors (GP's) are a complete waste of time as far as thyroid conditions are concerned. I started to take control and asked for a battery of blood tests to be done as per a recommendation from another thyroid website. I also asked for a copy of the results. The lab that tested them put their comments one of which was Antibodies (can't remember which ones) but in Capital letters at the side it said ABNORMAL but my GP response she wrote at the side NORMAL this happened for a few of the tests. I decided to leave the practice asap & never looked back. Your thyroid responds to TSH which is Thyroid stimulating hormone which then reports to your thyroid to produce more or less.. more meaning you are hyperthyroid and less meaning you are hypothyroid, this is very simplistic explanation. A lot of people cannot convert the T4 in synthetic Levothyroxine and you still retain all your symptoms. When your thyroid produces T4 your body converts it to T3 which is required by your body & if you have trouble converting you end up withsome of the T4 floating around in your system and it can end up in your joints causing pain which is what happened to me.
I also take a lot of vitamins B12- D3- VitC- Kelp- Selenium- Co-Enzyme Q-10 and Nutri Adrenal Extra as the adrenal glands plays a big part with the thyroid, I also take Oregano Oil for joint pain. I currently take 75mcg of Levothyroxine (T4) & 20 mcg of Liothyronine (T3) & touch wood I look & feel really well. Hilary xx
I should mention I have had a total thyroidectomy (May'13) as my thyroid was destroyed by the antibodies xx
Do you mean to say you walked into your GP's office and asked for a battery of blood tests to be done? Which ones did you have done if you don't mind me asking?
I've had Vit D, Vit B12, Folate and Ferritin done. No calcium, magnesium or zinc.
I'm glad things have worked out well for you - good for you and I'm sorry to hear you had a total thyroidectomy. That's a big thing to bounce back from and I take my hat off to you, really.
Hi! Jo Yes I asked for a full blood work up to be done which included the ones you mention. As I said the useless doctors put me on 50mcg of Levo never did a blood test for my thyroid function my weight went from 8st 3lbs to well over 10st in 12 months I felt so ill didn't want to get out of bed lost all interest in life hobbies etc so I researched & found a brill website in the UK run by a nurse they even have some GP's on board who advise members.It was they that suggested I ask for the blood works to be done & when I posted the results they interpreted them for me & is how I knew which vitamins to take. I ended up buying NDT (Erfa) from Canada & T3 from Mexico & my doctors were not amused in fact when I told them I was self medicating they became rather nasty & when I asked for the blood tests they went ballistic they did do them but when I saw their remarks, I made the decision to leave them & when I went for my interview with the new practice I told them I was self medicating & although I don't think they agreed with it were okay with it. When our circumstances changed & hubby was made redundant I knew we couldn't afford to pay for my meds so I approached my new doctors & they made me an appointment to see the endo as they can't authorise the meds I saw my endo & he agreed to prescribing T3 on the NHS he also said my blood test was brilliant everything was in the normal range I was so happy at least some of the financial burden would be taken away also when the meds come into the UK Royal mail also charge you to deliver them which was about £19 that is on top of the amount you pay for the meds (very expensive) then before I was due to replenish my NDT, I developed Graves disease and was referred to an endo which was the one I saw to ask for the meds the year before so he knew my history. Because of the incompetence of my last doctors I never gave Levo a chance but I made sure my endo knew that he couldn't just fob me off back to my doctors after the op which I give him credit for he said he would stabalise me before doing so I also made sure that how I felt would be taken into consideration & not just the blood tests and he wrote a letter to my doctors to saying just that which was a good thing as when they took over my care & my blood test came back as having a suppressed TSH the doctor who was new to the practice wanted to reduce my meds so I pointed out that my endo had sent a letter & he said okay we will keep you on the dosage & keep an eye on you. The whole point of this is, it is your body and life they are playing with & in most cases they know nothing as far as the thyroid is concerned, it is your body & you must fight even if they disagree you know your own body you know when something isn't right & you know when it is. I am such a passive person I would rather agree than cause an argument but under my old doctors I got so low & depressed that I actually took an overdose because I didn't know what was wrong with me they had given me these tablets which I thought would make me better and didn't plus I have other conditions which seemed to worsen as well. It was then I decided rather than wallow in self pity, I managed to find enough energy to find the website mentioned above and I can honestly say it saved my life, it gave me courage to fight for my health and the rest is history xx hope this helps someone to stick up for themselves & their health xx Hilary xx
Hi Hilary, thanks for your reply! Well done for fighting back!
There was one time back in August when the TSH was within normal range and I didn't feel at all well still, so because my GP didn't take my concerns on board and reacted very little to them I stopped taking my thyroxine and didn't restart it for 2 months. And my previous practice wronged me, big time, as they refused to keep testing my thyroid and when I complained about them to the PALs service they sent two threatening letters to me, to an address I moved to which they didn't know about and they had pulled up from somewhere. So I couldn't help but feel threatened by this conduct. I simply wrote back to them saying not to write to me anymore.
I've written to my endo describing my concerns about a possible nodule and will send it off soon. I even put a pretty technical sentence into it to make them take note that I mean business:
"Dear Dr ?
I attended an appointment to see you at the Endocrinology and Diabetes Unit on the 13th of January 2014 at 15:30.
Recently some newer symptoms have developed and I am concerned about a possible goitre or nodule at the front of my neck.
The area itself feels diffusely lumpy and I was wondering if an ultrasound scan on my thyroid would be appropriate.
I had an ultrasound scan done at the Bristol Dental Hospital in February 2012 and the sonographer who conducted this scan noted in her words a “bulkiness” on the screen, however this report seems to have been mislaid as my previous practice that had ordered it makes no mention of it.
If this report has indeed been located or there is nothing to assume I have any morphological changes with my thyroid, I would like it looked into as it would help put my mind at rest.
Thank you in advance.
Yours Sincerely........."
Hopefully this will make them take some form of action.
well done & said Jo I applaud you & yes if they think you have some knowledge they do tend to sit up & listen. Good for you & keep on at them as I have already said you know your own body they don't & you know if something is wrong or not. Keeping fingers crossed for a favourable reply xx ps I love your terminology in the letter, wish I knew what it meant lol xx
Hi Hilary haha yes thanks for your reply!! Diffusely lumpy means that the area feels lumpy all over and morphological means a change in its texture or appearance. In this case its texture.
Helvella! sorry I did not mean to step on any ones toes, I was just telling the truth of how they helped me I didn't even know about this site until recently which I have found very helpful & learned a lot that I wasn't aware of. I thought the reason these kind of sites/forums were to give assistance and does it really matter who helps us as long as we are getting help. Sheila used to be a nurse I think she is in her seventies now, I haven't even visited their new website. As far as the amount of people here or there I don't see the relevance & why you have taken umbrage to it.The last thing I wanted to to put any ones back up, I was just trying to help.
I am having a really bad night it is now 1.45am after going to bed at 11pm and woke up wet through sweating & can't get back to sleep. The only reason I mentioned they had a lot of members was due to the volume of posters some posts gets missed sometimes & so she would need to bump her post.
Again my apologies & I won't mention any other websites again xx
I am also quite sure that there are some very helpful people there - as here. Some might even be the same people - though it might not always be obvious.
It is quite horrible to wake like that - before being treated I would regularly fall asleep for a while then wake for hours. As soon as I started on levothyroxine my sleep improved. I have always taken mine at bed-time.
Rod has an interesting sense of humour He wasn't saying not to mention other websites. Different forums have different members and often provide different kinds of support, hence why there are all the different ones.
I hope you have had a better night. Thyroid does play havoc with sleep patterns! I sleep much better now I am better treated and I hope you do too.
I am sorry for being a bit tetchy normally the comment wouldn't have bothered me but I also have fybromyalgia & have been having a flare up this week, which doesn't help my mood...
Absolutely no need for apologies. You have done nothing that requires an apology Being very poorly and not having good quality sleep is extremely stressful. It sounds like you are having a particularly rough ride at the moment. I really hope things get easier for you soon.
If you have Hashi's don't stop your levo. This is a link which may be helpful as the Pharmacist herself has hashi's. At least you are trying your best to get better and we can only do that by reading and asking questions.
reallyfedup123. Yes I've just checked it says HI 169 ug/L. It's been high for years I've asked and the doctor says it's fine but I do get a lot of fatigue.
I wouldn't take to much notice of Docs (I know that's much easier to say), you are certainly not a hypochondriac. The docs do not (in my experience) have much of a clue about treating us, so we just get labelled a hypochondriac, depressed, stressed etc. As for the ACTH test that only show up Addisons disease, if you sufferer with Adrenal Fatigue that won't register. Also from experience and the research I have done, the TSH levels etc are not particularly
useful unless something is really out of sorts, my TSH never ever seemed to have any sort of resemblance on how I was feeling, it would go from sky high to very low within weeks. All doctors are interested in is getting you "in the range" and sadly that is it. You must always listen to your body. I wish you the best of luck x
I find that strange that if it's Adrenal fatigue it doesn't show up in the ACTH test results. I'm wondering what else the endo will do if that comes back normal.
My TSH did go sky high from January 2013 to May 2013 as it rose from 0.69 to 22 within 4 months.
Whenever I go to the GP about how I feel they don't seem to do very much for me and it seems I'm just wasting my life waiting for my next endo appointment in 3 months' time.
from my own experiences I know the GP's aren't interest in symptoms, It really is about getting you in the range. I had the ACTH test done last June and it come back saying all was fine - the ACTH test will only show up when 90% of the cortex is destroyed , I was in a real state, so I went to see Dr P ( I would recommend reading his book - Your Thyroid & how to keep it healthy: the great thyroid scandal and how to avoid it) that is a really eye opener and he hits the nail on the head. I done the 24 hour saliva test and it come back showing adrenal fatigue.
I have not come across a helpful endro yet but I hope I am proved wrong for your sake. The best advice I can give is listen to your body, keep a diary of how the medication affects you, always recording your pulses, temp & BP (These are good indications of how the med is being taken up) what symptoms improve etc and read up (there are some fantastic books about) I have improved since doing that and I have stopped seeing the doc, it caused to much stress (which is know good for struggling adrenals) you will get there
I'd like to see Dr P as I've heard so many good things about him - but I know that I would have to pay to see him and (not that I'm short of money) I'm not keen on the idea of having to be charged.
I'll get his book if it's cheap enough however but I'd like to see him in person as my thyroid therapist has said I don't look well at all and I want his honest opinion as to whether he would agree.
I'll keep a diary - thanks for the tip - but I have to remember to update it each day. (I'm not very good when it comes to being committed to do things!)
I do agree with you about paying out, but for me it was my only chance at getting better, my docs were not interested and the endro was equally unhelpful. Dr P is recovering from an op at the moment, they do estimate him returning to work next month. I have seen him three times (he only charged me the first time) and I think he is wonderful, I am not well but he did really save me that's for sure, You can get his book out the library for free, that is what I did x
I'll have a look for his book in the library in that case! Thanks for letting me know about Dr P. I hope he recovers soon and he sounds like a really nice guy.
I would not suggest stopping your medication,from what I've heard hashimotos is a tricky thing. Your thyroid could be working fine on its own one week and the next it could be really underactive. If you really want to come off medication then I suggest finding out what your hashimoto triggers are and trying to limit them,so your thyroid should hopefully remain pretty balanced.
It's going to probably be difficult in determining what one it is,but I suggest researching each one online to see if you have symptoms of them. Some of them have tests ,so if you do have symptoms I would get the test to confirm.
- Gluten intolerance as when I eat bread containing gluten I get constipation within 20-30 minutes. Gluten free, no problems.
- Low Vitamin D (not sure if it's the same as Vitamin D deficiency) but my Vitamin D is 43.6 (>75) I'm on Better You D: Lux Spray at 3000IU.
Ones I'm not sure of but possibly:
- Gut issues -- would this include malabsorption? I eat lots for someone of my size/weight but I shed it within a day. Nausea too.
- Adrenal dysfunction -- well, Endo is around 85-90% sure I have Addison's Disease due to the hyperpigmentation at my back and legs. ACTH stim test was done this morning but I don't know when I'm likely to hear back, given that it was booked urgently.
- Stress -- there are times when I get stressed (who doesn't get stress LOL?) but I don't get it constantly day after day.
- Viral infections -- would this include herpes simplex 1 (cold sore outbreaks) - I get a lot of these but never used to.
- Parasitic infections -- doesn't sound like something I would have and I wouldn't know how I'd get one!
- Fungal infections -- I do have fungal infections in my toenails but I cut off the infected nails.
- Chronic inflammation -- would this include Raynaud's as I suffer from Raynaud's?
- Blood sugar -- always down the middle of the range when tested.
- Sex hormone imbalances -- I have excess hair on my nipples, chin, legs, front of my body and arms. Had ultrasound done to check for polycystic ovaries and that was clear. Also get very tender breasts around my period. Oestrogen issue?
- Heavy metal toxicity -- I had a mecury filling put in but this was taken out so I can only presume I have no metal toxicity.
Environmental toxicity -- not sure what that is unless that means exposure to exhaust fumes and living within a city. In which case, yes.
Thanks for your help. I'll look at these now and see which of these I can get tested for - but I wouldn't know where to start!
Just the usual question;what about ur adrenals?.i mean that coukd be why ur not doing ok on med.But if ur ferritin is that low its likely to be the cause;ur body cant convert T4 into (the active)T3.Are'nt u u supplementing iron?Woah,thats v high level antibodies;i thought mine are extremely high at 600!Theres a brill book called 'Hashimotos Thyroiditis;Lifestyle Interventions for finding and treating the Root Cause' by Izabella Wentz.Shes a pharmacist who suffered Hashis ando recovered her health(3yrs research).thyroidrootcause.org.
hi Jo, i haven't had chance to read the other replies yet so I might be repeating other replies, but please do not stop your thyroxine without your gp or consultant's advice.
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
and I'm sorry to hear you had a total thyroidectomy. That's a big thing to bounce back from and I take my hat off to you, really. 
He wasn't saying not to mention other websites. Different forums have different members and often provide different kinds of support, hence why there are all the different ones. 
What now?
Dose changes advice please 
Endo doubts I take my 25mcg levo every day 
Confused by recent test - TSH and antibodies down, but also a drop in FT4 and FT3?
