For the past 10 years I’ve been battling with what I thought was depression. After numerous GP appointments, medication, counselling and hypnotherapy and getting no where I decided to do some research into my actual symptoms. My main symptoms being extreme fatigue, muscle aches, dizziness, balance issues, confusion, memory loss, no sex drive, blurred/double vision and irritability. After reasearching these symptoms I came across thyroid problems. I went to my GP last week and expressed my concerns about my thyroid. All he seemed to do was point my symptoms toward depression. Over the years I have literally tried every anti depressant going to no avail. My GP was reluctant to even do a blood test, but I just about managed to convince him to do one. He said that I had a thyroid test 2 years ago and it was ‘normal’ although he didn’t actually give me the readings. The faith in my doctor has been lost as I feel he just doesn’t listen to me when I tell him these symptoms are affecting my every day life. He has confessed to me that he doesn’t know what else to do and in my opinion, keeps fobbing me off with anti depressants. I must also say that during the last year I have also been diagnosed with sleep apnea and now wear a CPAP machine when I sleep but still suffer with extreme fatigue.
This morning I have had the blood test and I will get the results back next week. My GP said they wouldn’t test for T4 on the NHS as the lab wouldn’t test for this until they found the others abnormal. I just know that what I’m suffering with isn’t depression. I have suffered with depression in the past and it’s nothing like what I feel now. So I wait with hope that they find what’s wrong so I can be treated and can start to feel better. Is there anyone with any advise as to what to do if the blood results come back ‘normal’?
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Jamesey82
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Hi James For someone who is hypothyroid for 14 years it is shocking to read how uninterested is your GP. Therefore advice nu 1: take your treatment and cure in your own hands straight away. To do it would be useful to arm yourself with facts and knowledge/medicine abt thyroid. I read first Dt Peatfield's books: THE GREAT THYROID SCANDAL AND HOW TO SURVIVE IT BY BARRY DURRANT-PEATFIELD and Your Thyroid and How to Keep it Healthy: The Great Thyroid Scandal and How to Survive it. Next try to see him and do your own, private tests following his referral.
Second: try to get rid of antidepressant slowly and following advice
3/ Must start eating healthily. thyroid friendly food and do physical activity
4/ Insist to check adrenal gland function.
Copy this text before it is deleted as we are not supposed to talk dr names.
We are now allowed to state Dr Peatfield's name (he has been very, very ill recently) as he resigned his licence a few years ago due to the public pressure of being brought before the GMC, just like Dr Skinner did. Other doctors who have still a Licence we don't mention names on the forum.
Thank you so much for letting us know that we can talk about dear Dr Peatfield. Has it not been for him I am not sure if I would be here now. I hope he gets better soon.
It is an abomination that doctors who were trained in the era where they knew and understood clinical symptoms that they were then hounded like criminals for treating patients as they were taught. There were no blood tests then.
Nowadays it is the opposite. Most are untrained or wrongly trained, know no clinical symptoms nor how to relieve them. Some are very conceited and think they know best when it is the patients. Patients want to have a confident trust in the doctor but not when they don't improve or remain undiagnosed. I did and not one person thought of doing a blood test for thyroid hormones.
Hi Jamesey82. I think your comment ‘faith in my doctor has been lost’ expresses so succinctly the problem with the medical professions attitude to thyroid symptoms. ‘Patient research and treat yourself’ is how it feels. Well done for getting this far.
When you get your result (s) post them here with ranges (you need the numbers) and you will get advice. If told results are normal make sure you get the numbers, and ask for the results last time also.
I suppose it’s a waste of time pressing your gp about what is causing your other problems as he’ll say depression again.
Personally I would try to work through your gp however difficult. Hypothyroidism is insidious in onset, I think a lot of us have stories that begin like yours. But we get there in the end.
16 yrs was my prison sentence of depression. I also chopped and changed as i didn't get better in that time, but i only took one anti D tablet per day. Some people can end up on a few it seems.
It was trying for a baby which got me thinking i might have something else wrong. The sperm count was low and quality was low as well.
Long story short was i decided to just take some thyroid meds without involving the docs. I trusted what i was reading on the thyroid forums and went for it. This was 10 yrs ago.
I felt an immediate improvement and within 2 weeks i stopped the anti d's. I have never taken them since. I never had depression, it was a low functioning thyroid.
From the day i first became ill until i started on thyroid meds i had the same symptoms all the time. They never went away. The anti d's helped a little with mood but that was all.
Now my bloods were totally normal.
Aged 21 i had a TSH of 2.4 and an Ft4 of 14.
Aged 37 had a TSH of 3.7 and an Ft4 of 12.
Basically very similar results you will agree, but i was the same health wise (ill) aged 21 as i was aged 37.
Thyroid blood testing is faulty. There is so much more to it all and really we should be treated as per the symptoms. This used to happen prior to the 70's.
Learn about the condition and how you can help yourself with diet changes and attention to vitamins and minerals. This will help, but really you need some thyroid hormone.
Self treating may be your only option, but don't be frightened by this. You have a healthy life to lead. Don't led the idiot docs bully you. They really don't know that much about this huge issue.
Start using T4 if you do decide to go for some thyroid and start low and increase slowly.
It will not be a case of getting better immediately. It will take time to get balanced out again. I got better in the first week, but i was not 100% better. I messed around with all thyroid meds and took too much. This was my biggest mistake. Don't take too high a dose and go up slowly. It has been 7 yrs for me to hit the continued good health day in day out.
I have been what i would say is 95% fully well now for 3 years. I still look at making tweaks to my meds, but generally i am doing very well. I play quite a bit of sport and so i am still trying to see if i can improve the overall metabolism a bit more.
Post up your results when you get them and maybe consider doing some private testing with medichecks or blue horizon.
It's very courage's of you to share your story publicly with your very private story . I'm sure it's not easy for you nor anyone else to share their experiences .Your experiences that you so very kindly share is so valuable and extremely helpful for all those who are seeking help that are not getting from their Dr's as they Should .
Thank you for your amazing Courage .
May you find the Help you Seek and Happiness you Deserve .
Dear Marsaday...just have to tell that your story is a lot like my story.... Seems doctors know only to give a prescription for the "pill of the day"... started in the late 60's for me.... thanks for your story... it's good to know other people have done the same (educated and treated their own self) and are better for it ... 👋
Hi Marz. I'm early in my effective hypo treatment with my new endo afer 2 plus years of half@##$% treatment by my PCP/GP. And halfway through my weekly VitD loading doses. And 4 weeks into the addition of T3. I am already feeling better in some ways-most of all my (years of ) muscle and joint pains are virtually almost gone. But I am still feeling anxious and depressed- mostly angry at things that should not bother me. It is affecting my living comfortably in my senior living building and I am staying away from most residents so I don't say something I will be sorry about over the daily annoyances that living in this environment causes me to feel. My question is I really believe my 'years'of depression was actually thyroid related and when might I see a significant lessening of these symptoms? Sometimes other residents irritate me so much I can't even have a short civil conversation so I just keep on walking away and let them think I didn't hear them. If they mention my not responding I just say I'm hard of hearing and I'm not. i can't wait to feel better. Any anecdotes are helpful.
Mood and mental well being do improve as we improve our metabolic activity. This is what thyroid does, along with all the other vitamins and minerals. We become physically more healthy but also mentally better.
It is good you are aware of yourself as this will help in making progress. It is the same as being physically aware.
I don't have any examples for you, but i certainly became better at interacting with people as my health improved.
T4 at bedtime is something to consider. This is when i take it and the effects are so much better for me. It is a more natural time to take T4 as this is when we make it. IT can help with sleep as well. Certainly worth trying.
Thank you. You hit the nail on the head with your comment about interacting with people. This what I'm avoiding. So I am feeling hopeful as I believe I'm a social person. Also I am going to consider taking the t4 at night. It makes sense as then we can let it absorb several hours with no food. Do you take your T3 at the same time? The endo didn't say but I will ask in June. Thank you for answering me. I don't know which is worse about hypo-the physical or the mental sx. I do know my brain fog is slowly clearing up. The mental sx cause me a lot of anxiety because it's hard not to think my faculties are going. I've had neuro testing last year and am still sharp. But it is a worry. My brother died 5 years ago this month of cancer but he also had early Alzheimer's. I was his care giver and that is a scary way to live out our later years. 🐱 Take care xx irina
T3 in the morning if i use it. I only use 3mcg amounts approx. I find small doses work much better. I am now also going long periods not using it. Say a few weeks.
I reckon i am looking at 2 x 3mcg T3 doses per week longer term.
T4 works very well for me. Don't be frightened of dropping your thyroid doses occasionally to test if you are taking to much. It is a common problem, but people actually think they are under medicated. Really they are on too much.
Thanks. I will probably need the t3(started about 4 weeks ago at 5mcg-will now take separate) in the morning and t4 at night. My thyroid is almost completely atrophied from radiation for larynx cancer in 1984 so the new endo said I can hardly convert any t4 to t3. Even with this small starting dose I am beginning to notice various small positive improvements. Also tomorrow I will take my 4th weekly loading VitD dose of 50,000IU (my Vit D was 16) . So things are on the upswing. Also, since I have a pacemaker for afib none of my docs incl my EP are worried about aiming for a very low tsh-something my PCP/GP could never get her head around! She is no longer my primary. I could never get her to test my t3. Or VitD, B12, etc. I understand 5 mcg t3 is a small starting dose. One thing I like about this new doc is they will draw my labs a week before my appt so I will be able to discuss and offer input during my visit.My PCP always ordered at the end of visit- I think so she could send them online and not have to interact with me about the results. Can't believe I tolerated this for 2 years. Well. Live and learn my mother would have said!.
I've struggled with low energy and low mood and various other symptoms since my early teens. I present as hypothyroid yet my TSH test always came back in normal range. I've had a diagnosis of ME and depression.
I finally paid privately last September for a full thyroid profile including antibodies and free T3. (I used medichecks.com. They often have special offers on thyroid tests on Thursdays).
There it was, in black and white - I had a below range free T3 level.
I'm still trying to get the balance right with thyroid meds and it hasn't been plain sailing, but it was such a relief to see a reason for why I felt so dreadful all the time.
In primary hypothyroidism you get a raised TSH, as the pituitary tries to stimulate the thyroid to produce thyroid hormones. But in secondary or tertiary hypothyroidism the TSH stays low or normal - this is where either the pituitary or hypothalamus isn't working properly. Together they are referred to as central hypothyroidism.
Get your result and post it on here. And if you get the 'it's normal' from your GP, think about paying for a private test. Or you could try insisting on a second opinion from an endocrinologist. But in my experience, the endo was not remotely interested in me having a low T3. A lot of people on here self treat and self medicate.
I hope you get some answers soon. I know how devastating it is to see life passing you by when you feel so dreadful.
You've explained this so well. My problem is that I keep forgetting all these facts. Today I got my NHS results without range but can tell that I undomesticated myself (was neglectful) with Nutri Thyroid and Nutri Adrenal on top of my 50 mcg Levothyroxine over several months so TSH 4.64 and serum free T4 level 13.9 pmol/L. Prolactin level 274 (I insisted on having results). I will try to increase both levoth. to 75 mcg and start taking 4 tablets of Nutri Thyroide as advised with 50 mcg Levoth ( for few months I stopped taking Nutri thyroid supplement to check if that causes my eczema, it turned out it doesn't). If my TSH doesn't get normal in next blood test I might try full thyroid profile including antibodies and free T3 as you suggest. But not sure if I should see private endo first as I have no idea what should I test and how to interpret results. I used Genova diagnostic last time and I wonder what is difference between Genova and medichecks.com? I live in SW London and could take my test in person. Thanks.
Genova and medichecks are just both companies who offer private blood tests. Both are ok to use, it's just personal preference.
As to which test you get done, to a certain extent it comes down to which you can afford. As a one off the first time I got one done, I went for this one: medichecks.com/thyroid-func... which includes a lot of thyroid tests plus vitamin D, folate, ferritin, B12 and an inflammation marker test. There is a similar test that covers all this except the reverse T3, which makes it cheaper (and quicker to get the results).
This is a list of clinical symptoms of hypothyroidism - doctors know none nowadays as since the introduction of blood tests and levothyroxine they've forgotten all about clinical symptoms as that's how we used to be diagnosed and given 'natural dessicated thyroid' hormones until symptoms were relieved.
Quite a number of people have been incarcerated due to mental health issues but they had undiagnosed hypothyroidism.
We are better to get advice from most of the 80,000 on this forum who have had to do most of the work themselves in order to relieve symptoms.
If you have blood tests for thyroid hormones they should always be at the earliest, fasting (you can drink water) and if you were taking thyroid hormones you'd allow 24 hours between last dose and test and take afterwards.
Always get a print-out of your blood test results with the ranges. Ranges are important as labs differ and it makes it easier to respond. If you copy and past your above introduction and add it into your Profile (where you introduce yourself) because for future questions members can read it and know some of your background which helps responses.
The problem in the UK is that doctors have been told not to diagnose until the TSH is 10. We could have severe symptoms by then but remain undiagnosed because the TSH didn't reach high enough. In other countries we are diagnosed when TSH is 3+. So people have to suffer unnecessarily due to the bad guidelines.
We take our own health into our own hands and the doctor may be useful for taking blood tests but they are only basic and don't give a 'bigger picture'. For instance a Full Thyroid Function Test is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. The basic is TSH and T4. If you haven't had a FTFT you can get those not tested through one of our private labs and that will be a good starting point. You don't need to get a private test every time but you may need one initially.
Ask GP to test B12, Vit D, iron, ferritin and folate. Deficiencies also cause symptoms and both B12 and Vit D are pro-hormones with essential work in our bodies. Put your new results onto a new post.
Thank you all so much for the replies. I’m very grateful and im keeping my fingers crossed that this is the beginning of figuring out that this can all be resolved
Low cortisol can have identical symptoms to hypothyroidism so this is something else to investigate. There are some home tests you can try in this article posted by another member: tpauk.com/main/article/test...
I hope that you will soon get the correct results so that you are able to have the right medication to get your life back on track. You're very brave to share all your concerns on here and have taken a big step forward in helping yourself to feel as well as you can be.
There are so many knowledgeable people here on this great site who can help you a lot. Good Luck!!
Please see below my suggestions to help you start to get better
1. Wean yourself off your anti-depressants
2. Consider paying for a full thyroid blood panel test, as the doctors will only ever check TSH and T4 and ideally you need to see the full picture (this can cost up to £150 but prices vary around the UK). Also get your vitamin levels checked Vitamin D, Folate, ferritin etc
3. Consider the foods that you eat as these can be the cause of some of your symptoms, so try going gluten free, it is a lot easier than you think.(just more fresh fruit, veg and meat and fish, try to avoid processed foods)
4. Try and find a nutritional therapist who can help you with the blood tests and food, they can help talk you through your symptoms, and advice a better course of action to help you sort out your issues. (unfortunately this can cost money too, but they are worth their weight in gold and worth they expense, if they can make you feel better).
So far I have paid out just over £300 to do the above and in recent weeks felt the huge benefits physically, mentally and emotionally after 18 yrs of battling my GP.
This is an excellent self treatment plan you've laid out for all of us. My suggestion would be for patients to print out copies and take to their docs. Healthcare is all based on a treatment plan. I always bring a treatment plan-updated- to my appts.. Nothing fancy- an index card will do. I include questions, suggestion about possible changes and expect full, intelligent, specific answers. I find most docs appreciate the time and research I put into my index card. If they are put off by my participation then I begin to think that this is not a professional relation that is helpful to me. As a nurse I learned years ago hardly any care was ever done without a plan. Continuing this system for myself helps me keep my thoughts etc organized and on target and my written reminder helps me keep the doctor on track too. And I make notes by each point so I remember what was said. An extra benefit of this is when they see you writing they tend to be careful of what they say! Not a bad 'side effect' of the visit! Take care. irina PS Your chart the doctor keeps is an overall plan for your care. Why should he have the only documentation?
Just to say my heart goes out to you and you are in the right place and will find wellness
And i could have written your post, truely, iv been going in and out of docs for 16 yrs struggling on daily basis and coukdnt tolerate anti depressents
In 2016 i finally got diagnosed by a new young gp ( by then i had been forces to move bla bla as im on own and couldnt work enough hours to keep afloat because of symptoms)
Moving on, follow expert afvuce here
Iv seen the wonderful Dr P and he is healing my insufficient adrenals. I may need thyroid meds again but firstly he wants the adrenals strong, for sone this seems to be needed more than others but i did feel better on thyroud meds before i saw dr p
Please take heart you will get well, its apalling how weve struggled unucessarily i know xxxx sirry if reoeated as havent read all posts, haha i have some brain fog today but its ok brain fog not deep stuff xx
...takes a while to get the whole picture as a lot of info to take on board, one step at a time, you are in right place
I listened to a video last reinforcing it is so important to heal any gut issues, as the link is big, there are posts to read if you want - if you put your topic in the box at head of page
Just to clarify, I took myself off of my antidepressants about a month ago now I wanted to prove to the dr that when I went to ask for bloods that they’d done nothing for me.
I don't come on here very often, and when I do I sound like a record - for which I apologise. Have you considered getting privately and properly tested for Lyme Disease and co-infections, including blood borne parasites? More people on here than will ever know have infections as the underlying cause of their hypothyroidism.
Yes, treating your thyroid makes a huge difference, I can vouch for that. Before finding Lyme & Co I was on 125mcg thyroxine and 25mg hydrocortisone (for adrenals) along with nutri adrenal and nutri thyroid (thanks Dr Peatfield, who was the first doctor who ever actually listened to me).
Since treating my underlying infections (it;s almost never "just" Lyme) I am now on 25mcg thyroxine and 10mg HC (along with nutri adrenal and nutri thyroid and both in much reduced doses).
You need to identify and stop the underlying attack to help you improve.
Thanks for the reply. Every bit of info I get helps.
I’m just waiting for the results to come back from my test yesterday to see what my GP says about them. From there I’ll be paying for more in depth tests as I doubt my dr will admit there’s anything wrong but hey he might surprise me.
It can be done on the NHS. Mine was negative, as most are. Unless you are recently infected, even a positive test is usually rejected as a false positive. I was tested by Igenex in the States. Some use Armin labs in Germany. You'd need to do a little research to decide who to use. I think there might be some newer companies and tests more recently.
It’s not just me but the people around me who have stuck with me Even when I’m miserable and irritable My other half has only seen glimpses of the old me.
you need a print out of your blood tests, and the GP is obliged to give them to you so ask at reception and tell them they are your test results and you are legally entitled to them. Post them on the forum for someone to help. If it were me I would go for a private blood test with medichecks (thyroid thursday for discounts every thursday) or blue horizon medicals. Get one with a T3 on it and get the best you can afford to buy.
Good to hear you're thinking of getting private tests. It made me sad to hear your GP is only doing TSH, as this will tell you very little, AND GPs often wait for it to get ridiculously high before diagnosing.
The two main places you can get the blood tests are Medichecks and Bluehorizon - more info on ThyroidUK website. These are finger prick blood tests you do at home and post back to them. They both do packages for thyroid, so you can get all the tests you need in one blood sample.
You need a complete thyroid panel, TSH, freeT4, freeT3, ideally with antibodies.
If money isn't tight, get vitamins too, ferritin, folate, vit B12, vit D, as these are often deficient when you've been hypothyroid, and they help the hormone work.
The way the tests work is that T4 is the storage form of hormone, and the one your thyroid makes the most of (and is in Levothyroxine, the form of replacement you'll be offered on the NHS hopefully). This is converted throughout your body into T3, the active form of hormone that is used by every cell, tissue, organ in your body as part of producing energy. FreeT4 and freeT3 measure how much of these you've got available in your blood.
TSH is thyroid stimulating hormone, and is made by the pituitary to call your thyroid into action to make more hormone. If all is working well, the lower the hormone in your blood the higher the TSH.
Any point in these processes things can go wrong, and its any of that detail that TSH alone can't tell us.
Thank you for the explanation. Money is a little tight right now but I’m going to make sure there’s enough for the test because this has been going on for way too long now Once I have the NHS results back I’ll be getting the others ordered.
The cheapest way to get tests is to look on Medichecks on Thursdays for their thyroid Thursday sales, and the minimum test package that will get you started is TSH, freeT4, freeT3, you can put off thinking about antibodies and vitamins till later if you want to. I think this can come to about £30, but that's from memory.
I agree you should wait and see what the NHS test says first, you may get lucky.
Sorry to butt in but it’s so true at the thyroid lottery.
One of the big problems is this- diagnosed with hypothyroidism means you get medical exemption for life and comes from GPS budgets I believe.
Depression and mental illness (along with dementia) has now been pushed through whereby GPS get paid extra for every patient they diagnose (similar to diabetes which is why it’s pushed no so much)
So you can see why they’re so reluctant to take away your diagnosis. However it also boils down to sheer ignorance regarding thyroid. Because depression and diabetes are such high profile conditions they are a lot more aware of it. It’s very sad... I hope you get the treatment you need.
Jamesey82 I would get your B12 levels checked as a lot of your symptoms sound like that too. Anything under 600 I would treat myself. Doctors won't treat unless you are under 250 I believe. I would also get electrolytes checked, and up magnesium. Did he say anything about your iron levels?
I would get print out of all blood tests Jamesey82 as they could be borderline and they are not doing anything about them. We are entitled to take a proactive care of our health now. I just smell a tiny rat as the symptoms you describe are the same as mine and I was hypothyroid and low B12 for a lot of years without treatment, this eventually took down a lot of other stuff for me as well, adrenals, cortisol, blood sugars.
I’ve been to so many doctors,specialists and medical groups, I finally just quit. We are just numbered to them.
I went to a Functional Doctor and they did a blood analysis, body scan and found out I’m hypothyroid. They made me take my temp every morning it was under 7’5 and put me on Nature Thyroid. Hope this helps
....a couple of other thoughts, the vitamins really are important to know and be good level, - I initially bucked up when I discover the b12 and D was very low, (I had been dragging around with muscle ache at that point, then scarily got a bit breathless. I was a keen jiver and relatively fit prviously ) the difference was amazing in short space of time and took sublingual spray in mouth, not capsules, as at that point I realised I had to heal my leaky gut and flora, (the vits can leak through the lining if it's leaky, I'd never even heard of leaky, so if absorbed through tissues in mouth via spray good option, lol you aren't what you eat but what you actually digest 👍
Selenium 200 is recommended to help t4 to t3 conversion
I'm having bioresenance therapy next week, this will be interesting, it scans your vits, intolerances, heavy metals, candida, leaky gut and many others, bit pricey but I'm die blood tests so thought it a good point to get it
Keep going, baby steps
Yes the anger can come in for sure, to me this is the worst thing, I'm starting punching to music classes next week, that should do it, lol a cushion doesn't quite press the button
Thanks for the info.....since 2008 my blood tests show slightly raised tsh and low borderline ft4 but endo said nothing wrong and refused other tests. I've been referred to 2 more endos since then who both refused to see me on 'clinical' grounds. Never quite understand that.....but I think I have Central Hypothyroidism. I'm now self medicating with t3 after seeking advice on this fabulous forum but can't seem to get the right result....I was thinking that I had a case of medical negligence.
Change your doctor mate asap. If only I had changed mine when my thyroid packed up or gone private I'd still be running my business. The NHS should do something about the epidemic of GPs' god complexes. In my experience not many can tell their humorous from their posterior and that's putting it politely.
Thanks again for the support I got my first lot of blood tests back today I asked for a print out and have them. Is it best to start a new thread or post them here?
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