Hi If anyone can give me some advice I would be most grateful.i have been trawling the internet for help as my doctor doesn't seem to care. I got diagnosed with an underactive thyroid four years ago,since then I have become overweight ,depressed and lethargic.i feel like a blob just existing . I regularly some up the courage to go to the doctors with my symptoms praying that my results will come back abnormal so I can get a higher dose of levothyroxine (I am on 100mg).That happened once when I seen a locum doctor .I have never had my results or this condition explained to me .when I first got diagnosed the doctor just said to me at least you will get free prescription s for life!!
I am so fed up.my doctor thinks that as long as I am in the normal range (whatever that is ) that I am fine and just tells me I am depressed.I go away disheartened with more antidepressants .I have no energy and get exhausted easily i eat very healthy I doesn't reflect my bloated 3stone overweight body.I am only 37 yet my parents are more energetic than me.i am so desperate at the minute as my symptoms have worsened ,that I have bought some extra tablets off eBay so I can up my dosage before my next doc appointment in the hope they will make me feel better,then I can prove to my doctor I need a higher dosage.My sister had an over active thyroid and was monitored properly at hospital. Does anyone know if you can see a speciallist for an underactive on the NHS ?
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Abby77
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Absolutely you can see a specialist on the Nhs, they are called endocrinologists, but many of them specialise in diabetes and their only qualification to deal with the thyroid is that they know where it is.....
However, what you could do, is write a note to your doctor, say that under the terms of the 1998 data protection act you would like a of copy of the results of any tests which have been conducted over the past 5 years. You do not have to give any reason, though the doctor can charge for printing. Send a stamped addressed envelope.
Once you have the results of any thyroid tests, post them on here and we can help you see if he is managing your thyroid problem effectively.
feeling rubbish when you are on meds for thyroid can be down to many things..... Firstly it may simply be a case of too little levothyroxine (t4) being prescribed.
Or it could be that you have low iron saturation, low ferritin or a lack of B12, magnesium or d3. or even adrenal issues.
Many of us have regained our health, despite the doctors and the endocinologists.... (Although to be fair some docs and some endos are helpful and knowledgable.) Generally its down to making sure we have to correct levels of vits and minerals and are taking the correct thyroid hormones.
Have you had a look at information on the thyroiduk website? A good place to start reading up.... You are probably going to have to become an expert on your own condition. Www.thyroiduk.org.uk/index
I just burst out crying when I read your reply.You are the only person who has actually given me any advice and listened.Thank you so much.I will post my results when I get them.i will get reading up.Hopefully this will be a start to feeling normal again .
Hi Abby77, I cant give you any info as I actually have the opposite problem an overactive thyroid.I just wanted to welcome you and say you are definitely in the right place here, there are some very knowledgeable members to help you . Hopefully this will be the start of you learning lots about your condition and making some inroad into starting to feel better, you sound like you need a hug so sending you one! Hugs ..kim x
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My sister has overactive thyroid. She is skinny as a rail and when she holds her hands out, they shake. She has bulging eyes and her neck looks like she swallowed a tiny watermelon. (exaggerating) but you know what I mean. She goes up and down. It's been hell for her. What I notice is that sweat above her lip and then she needs to get in. Does yours fluctuate up and down like hers? The tiniest change in dosage does extreme change in her body. X Karen
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Oh yes Yikes that all sounds familiar! Never got skinny as a rake but lost weight, very shaky , sweaty etc oh and very anxious. Doing ok at present I came off meds 5 weeks ago to try for remission .Yes I can tell if I just go a bit overactive its a blooming balancing act alright! X
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I am following your progress and pointing it out for her to keep trying and to have patience. She has gone the yo-yo weight to 40 lbs heavier (for most of the time) I worry about my sister Sue - just reading along to see if I can figure things out and go with her to the doctor- I need to understand from people that are really dealing with the horrible things that go with as far as symptoms go. I am learning new numbers on here. =) She too has symptoms before the numbers are outside of the so called normal results..by the time the numbers are accepted by the doctor as problem numbers, the poor girl is suffering so much especially when she's hyper..
She is so symptomatic. I worry. We are close.
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I have my first post treatment bloods done next week so I will be posting on here.Is your sue on meds for hyperthyroidism? Sounds as though she has Graves disease from your description of her eyes.What treatment has she had? X
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She had some radioactive idodine, also her heartbeat was so fast that she took atenolol. - to slow the heartbeat down. There were anti thyroid meds and she is still taking them. That's how she ends up going from one to the other with that balancing act. She has periods when it's going perfect for her with the medicines and suddenly the scale goes up for weight, the girl is so tired that it threatens her work abilities..so they take her off of the blood pressure beta blockers first and then adjust..depending on her blood tests. Thyroid removal and partial removal has been in discussion. She refuses...to her, it's not worth it and she'd rather die from it.
That's why I am on this particular site..to involve her and get her to know that others have done just the same with medicines..
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Ah right she has had RAI, many members advice me not to have that as its difficult to get it just right.They either dont give you enough so you are still overactive or too much so you go undeactive.I would put up your own post as it cannget lost.Also put RAI in search box.I have been advised should it become necessary then surgery is preferable to RAI. She needs her bloods done regularly and post results on here for people to comment. Yes you can feel very ill with hyperthyroidism as I well know.I also had the betablockers as the palpitations can be relentless. It seemd they are having difficulties gettingvSue stable I was lucky there I went into range quite soon after starting anti thyroid meds .Put up a post there are some good members on here to help , I am still learning was only diagnosed last November. X
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I am waiting for her to get over here so we can start looking at this entire post together again - yes I will or she will post. =) Thanks for the comments and help. I would say that my sister Sue is more evidence that they are not getting it just right..she's fluctuating.. a lot. She gets so sick with this. RIA is pretty rough on her to get it right.
Aw thank you.there are some lovely people on here. I have had so many responses. I've already learned so much .i am actually looking forward to my next doctors appointment ,armed with all my new found information.
Arrr don't cry,we've all at sometime,felt down in the dumps,frustrated,felt not listeners to,as we don't know already how we would feel,great site on here,l trust the . Knowledge on here,
I upped myself to 125mg,from 100mg,my doctors actually said,well you know yr self more than me,yes let's see how you get on.
Some do work with you,l felt tired,feel bit better now,wake up feeling refreshed in the morning,bloods on the 21st of this month.
Please don't feel alone,where all here,we help one another,support, lve had some good advice,hope you feel better soon
Sue11 xxxxx
Hi Abby. I too have a problem with my weight and horrible symptoms. I have not been diagnosed with hypothyroidism but my last TSH was 5.37 with range 0.03-5.00 so I am convinced there is a problem with my thyroid but cannot get a doctor to listen to me and give me a full thyroid test. I have been diagnosed with fibromyalgia, RD and osteoarthritis and I have found the lovelies on here really supportive and helpful and I have learned loads of tips to start my way back to better health. They let you know you are not alone. Gentle hugs Joolz.x
Hi What is your TSH, T4 and importantly FT3, with ranges. Usually weight is too little FT3 and then you need T3 with the T4. Depends on bloods. FT3 needs to be near the top of range but never over. If GP cannot do FT3 test, use on line. I use Blue Horizon, quote TUK 10 for a discount.
You are most probably on too low a dose of levothyroxine and doctors are happy when we reach 'normal' range and believe WRONGLY their job is done. It is a disgrace that they only go on the blood tests when dispensing medication and don't listen/take notice of the patients symptoms (which is the most important - they don't appear to know that either). It is surprising to me that there is no blood test for depression but are willing to dispense anti-depressants instead of a good dose of thyroid medication. Psychiatrists can prescribe T3 for their depressed patients as T3 is the active thyroid hormone required in the billions of cells in our bodies for us to function properly but GPs cannot but they could prescribe more levothyroxine (T4). We are usually undermedicated due to them diagnosing a computer print-out than listening.
Galathea has given good advice which you should follow and you will eventually get better, with or without the GP.
When you go for your next blood test for the thyroid gland, do not take your medication before it, take it afterwards. Have the earliest possible appointment. Also ask for a Vitamin B12, Vitamin D,iron, ferritin and folate to be done as we are usually deficient. You should take levothyroxine on waking with 1 glass of water and don't eat for around an hour as some foods interfere with the uptake of levo. Don't take other supplements/medications within 4 hours of levo. Always get a print-out of your blood tests and make sure the ranges are stated (these are in brackets).
If you want to reply to a particular comment, you press reply and the person is emailed that you may need a response.
I too am overweight (by about three stone), it didn't seem to improve once I was given Levothyroxine (in fact two and a half of those three stone went on almost straight away!)
My own GP isn't bothered, and seems to think that as long as the annual thyroid tests are OK nothing needs to be adjusted.. I am planning to make a private appointment with an endocrinologist, as I've also been told I have pernicious anaemia and fibromyalgia. So many symptoms are similar to hypothyroid myopathy, and can apparently be confused.
What I would suggest is to ask for your B12 levels to be checked, as often pernicious anaemia and underactive thyroid seem to be linked. It will certainly mean you still feel really tired and low. The other thing is other vitamin levels, as the thyroid condition seems to drain lots of them, not just B12!
Interesting you say about cholesterol. Mine had always been at 3, it went up to 4.2 with levo and was still climbing. Changed to Armour felt better had my cholesterol test had gone back to just over 3. Something else Doctors ignore.
Abby: It may also be that levothyroxine (T4) alone is inadequate to treat your condition -- regardless of TSH -- and your's is still high! TSH seems to be a one-size fits all standard which replaced diagnosing by symptom. If you do not convert the inactive hormone (T4) to the active T3 (liiothyronine) then even a higher dose of levothyroxine won't work, and won't be reflected in the TSH either. I was fortunately first diagnosed in the US, where the regime for treating thyroid is more progressive. I began with T3 only and only later added T4. Back in the UK, a well-meaning GP convinced me I needed levothyroxine (T4) only at a higher dose -- and I then manifested ALL the symptoms you describe. In fact, I became hyper & hypo at the same time!! You can see if you can find a doctor who will prescribe Armour or Erfa --(natural thyroid, which has both) -- on a 'named patient only basis' or, if you're ordering on the internet find some T3. (How/where is regularly discussed on the threads here.) One good check is body temperature -- mine was very low -- and I was told by the US GP that this inhibits manufacture of seritonin -- without which you get depressed. Only T3 brings mine up. I am now very stable on a combined regime. Good luck.
Yes, you can see a 'specialist' but be aware that the huge majority of endocrinologists are DIABETES specialists and know very little about hypothyroid. Were I you I would learn all I can and go armed with plenty of stuff for the endo to read!!
The endo has time for a few glances but will not read much. They just cannot afford the time. Summarize into as few words as possible for a super quick read and maybe they will "get it"
Abby, what exactly did you buy on eBay? I doubt if it's levo because that's a prescription only medication. Do be careful what you take. Google the ingrédients before you take anything because they could do more harm than good.
I too have struggled for a couple of years. Each time I went to the GP with the usual symptoms....tiredness, hair loss, flaking nails, painfull joints etc etc. I was told my results were 'normal' When my memory started failing and I had brain fog, I looked online for help. Luckily I found this fantastic forum without whom I don't know how I would be right now. I armed myself with information, I asked for a printout of my results, on the sheet was printed 'no action required'
Although my results were not too bad they were far from optimal and I was still symptomatic so I made an appointment to see my GP again, I told her that I'd done some reading on the thyroid UK site and thought I'd benefit from an increase of levo. Suddenly her attitude changed and she happily increased my dosage. 6 weeks later there was no change and she agreed to another increase.
I think once my GP realised that I had done some research she began to listen and work with me. So I would suggest reading as much as you can ask for all the blood tests suggested by the other knowledgable people on here, post them for advice then you will be well informed when you next see your GP.
.... Absolutely agree with you on that one.... I too have taken responsibility for my health and have had very useful conversations with my GP even to the point of them saying there is nothing more they can do for me. They are only able to treat the symptoms and unless you find a doctor who is into functional medicine then I suspect this is the norm.
If you top up your dose your results will be that your levels are fine!!! Don't do this it could be dangerous. Ask Dr for blood tests for fibromyalgia. Look it up on Internet. Also full blood counts as you could be anaemic...... I hope this helps...Korean ginseng capsules will give you a boost.....
Hi everyone,I didn't have time to answer all of you personally.i just wanted to tell you what has happened since joining this site.
I went back to my doctor with my symptoms,who the promptly put my citalopram up (sigh) !! Although he reluctantly said I could have a b12,ferritin and vit D. I had a t3 test done privately I couldn't be bothered asking him. Any who I am now feeling much better as I was low in ferritin and this week my surgery rang and said my vit D was low. So now hopefully I will be back to nearly normal.i am so glad I found this site.
My ferritin was 8 (15-150)
But apparently that's not something they would normally be bothered about as it means nothing, I have the iron tablets now and and feeling so much better.
He didn't tell me what my vitamin d results were only that I was deficient.just borderline.
Just one question if anyone can answer it is my t3 which came back as within range (4.4) should it be a bit higher? Or do you think it will go up with the vitamins I am taking?
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