Surely I am hypothyroid? Very frustrated - Thyroid UK

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Surely I am hypothyroid? Very frustrated

Hoop1888 profile image
45 Replies

Hi guys

This is my first post here so bear with me.

I’m 26 and have been getting some hypo symptoms for years no e.g. very cold, tired. My thyroid was tested and found to be borderline but no action taken(don’t know the actual level.

In the last two years I’ve been experiencing more symptoms e.g. cold, tired, breathlessness, thinning hair at the front, constipation, breathlessness, low heart rate (under 60bpm), depression and struggling to get fitter despite exercising. I did have low ferritin but was treated and it’s since gone up so I’m no longer deficient yet I’m still struggling . However, as much as the doctor mentions the thyroid test, she says it’s borderline so shouldn’t be causing symptoms. I asked for my results a few months ago and TSH levels went from 6 in November to 6.67 in March.

I’m feeling terrible and convinced it’s hypo but don’t think doc will bother exploring that. I’m only young yet feel so much older than my years because of these symptoms :(

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Hoop1888
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45 Replies
greygoose profile image
greygoose

With a TSH of 6 you are most definitely hypo. Did your doctor tell you the range? Because I'm sure it's over-range. If so, ask her what she thinks ranges are for?!? You can have terrible symptoms with a TSH of 2, so she really doesn't know what she's talking about.

Hoop1888 profile image
Hoop1888 in reply to greygoose

I think the top range on the page was 5 so she said basically that my result is borderline even though it is out of range and it got worse (from 6 to 6.67). So I have to wait another 6 months for another test. I’m at a loss!

greygoose profile image
greygoose in reply to Hoop1888

So is your doctor! You're not borderline at all, in the real world, only in the UK! You're going to have to do a bit of putting your foot down! You really should be on thyroid hormone replacement. :(

TSH110 profile image
TSH110 in reply to greygoose

They spout some clap trap GG makes me fume

greygoose profile image
greygoose in reply to TSH110

They sure do! They make it up as they go along. Makes me fume, too.

Heloise profile image
Heloise

Hoop, your doctor is negligent. With a TSH of over 6 and all your symptoms spell out the fact you are hypothyroid and getting worse with time. Is she waiting for you to become bedridden before she faces this fact. You probably have other deficiencies besides ferritin. You definitely need B vitamins and vitamin D. Selenium and zinc work together as cofactors. Can you get another doctor? This one is dangerous.

Mamapea1 profile image
Mamapea1

You're definitely in the right place, and are definitely hypo! Your GP is sadly lacking in knowledge regarding thyroid issues, as most of them are. You will get excellent advice and help on this forum, so don't worry. Such a shame though, that you're having to suffer like this because of ignorance😕.

You will have to be insistent with your GP or find another, more knowledgable one who is prepared to treat you by addressing your symptoms, which they should all be doing anyway. Try to keep vitamin and mineral levels optimal (all the ones suggested on forum) and magnesium citrate powder (I use viridian) is particularly effective for constipation.

It's best to learn all you can by reading around the forum and asking questions so you are armed with information for any future battles you may encounter with GPs. Poor treatment of thyroid conditions is common and leads to very poor health so you have to keep your wits about you to avoid the pitfalls.

This forum is a mine of information and members are very helpful ~ in no time at all you will know more about the thyroid than your GP ~ No wait, you do already lol! 😊. Hope you'll soon be well 💕x

Marz profile image
Marz

Are you in a position to have Private Testing done through Thyroid UK ?

thyroiduk.org.uk/tuk/testin...

Hoop1888 profile image
Hoop1888 in reply to Marz

Apologies Marz. Yes I could get testing. The only thing is, how could that then lead to treatment?

Marz profile image
Marz in reply to Hoop1888

Because you will have the FULL story

😊

Try another doctor in the practice. I would bother arguing with the one you have I worked with doctors foryears and it is rare to find one who does not dig heals in if confronted with a mistake. Itmight also be worth raising this with the practice manager and if you have got the energy reveiw this doctor on 'improve health care.com'I think itis called to ward others of her lack of thyroid knowledge.

You can and will get better so keep comming back here for some supportand you might want to start by getting copys ofall blood results andposting here.

Treepie profile image
Treepie

In the UK the NHS usually waits until TSH is 10 before treating,a practice that is hard to justify.See if your doctor will give you a trial but make sure its 50 mcg not 25mcg which can make you feel wirse.

Naomi8 profile image
Naomi8 in reply to Treepie

This is a clear & unfortunately very common example of doctors trained to diagnose on blood tests,not how a patient reports feeling.This then seems to lead many doctors to believe that the symptoms being reported by the patient HAVE to be the result of other conditions .Some examples given are depression,ageing,hypochondria.As the vast majority of people with underactive thyroid progress to reaching what the NHS decides need thyroid replacement,this surely contravenes the Hpocratic oath?

In this example,I would try to find a doctor who is listening to me as an individual,not as a neurotic stereotype.Not an easy task,given the state of GP practise in the UK.

Sleepybunny profile image
Sleepybunny

Hi,

Might also be worth looking into possibility of b12 deficiency. Some of the symptoms you describe can be found on lists of b12 deficiency symptoms.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Lots of B12 info on Pernicious Anaemia Society forum on HU. Thyroid problems are quite common amongst people posting on PAS forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717

B12 Deficiency Info website

b12deficiency.info/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Like thyroid disease, B12 deficiency is not always as well-understood as it could be amongst doctors.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

I am not medically trained.

Emm555 profile image
Emm555

Hi, I strongly advise that you follow the advice above. I was your age when I was first told I was “borderline” hypo and too young for medication. At 49, I’ve finally been diagnosed with autoimmune thyroid disease because I found out about private blood tests on the Thyroid UK website. In those years my health has never been right, I’ve had multiple miscarriages, fertility issues and every thyroid symptom on the list, although by some miracle I do have two children, although my second had thyroid issues at birth. I’ve had several total meltdowns, particularly in the years since my second child was born. The GP constantly patted me on the head and offered me anti depressants, which I always refused. Since reading the Thyroid Uk website and Dr Barry Peatfields book in January, I’m astounded that this wasn’t picked up! I had private tests done and my new GP acted immediately and referred to an endo, who is fantastic. So have the full thyroid tests done privately and find a new GP to take the results to!

in reply to Emm555

That's great to hear, I'm really happy for you! Have you started thyroid hormone replacement yet? If not, I am sure you will start feeling better the minute you do! Your doctors' incompetence should be a criminal offence IMHO...!

SlowDragon profile image
SlowDragonAdministrator

You need FULL testing

Your GP is unhelpful

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

satu55555 profile image
satu55555

TSH 6 is definitely hypo. I have 1.75 and we still tested medicating as I've had Hashimoto's, which has improved a lot with treatment (nutrition and rest). My doctor who is specialized in people with thyroid issues said that a good TSH with no medications is around 1.

Gambit62 profile image
Gambit62

Hoop1888, was this your first thyroid test or is the second that has shown you over the range?

The thyroid is quite sensitive to damage and often recovers on its own which is why GPs tend to be wary of jumping directly into treatment, but that doesn't mean that you have to be left in limbo. If your symptoms have been going on for a long time so you have been to the doctor several times then it may be time to look at whether the cause is auto-immune eg by looking for thyroid antibodies to see if the problem is hashimotos - in which case it would probably be better to start treatment now rather than waiting for levels to get a bit higher as some guidelines suggest.

If you have already had problems with iron levels then that might also point to an established hypothyroidism or an auto-immune gastric condition - PA - which leads to problems absorbing B12 in particular but also affects other vitamins and minerals - links to the PA forum were given on an earlier response.

Hoop1888 profile image
Hoop1888 in reply to Gambit62

Well got thyroid levels checked about 8-9 years ago and came back borderline but I didn’t go back for the repeat. About November time I went back because I felt the symptoms but didn’t mention these to the doctor - I let the doctor to her job. Was worried that I’d come across as a hypochondriac basically :( So came back borderline at 6 then got retested six months later and came back 6.67. I got T4 and T3 and think these were ok range although T4 was very nearly out

Gambit62 profile image
Gambit62 in reply to Hoop1888

okay, think you need to go back to GP and point out that your TSH has been elevated for 6 months meaning that it is unlikely that the this is due to a temporary problem, you are symptomatic and would like to start treatment.

Whilst I understand that you there is a fear of coming across as a hypochondriac if you list symptoms not listing them means that your GP is not being given all the information they need so not really in a full position to 'do their job'.

Heloise profile image
Heloise in reply to Hoop1888

Hoop, your TSH should be NO higher than 2.0 (even that is probably too high).

SilverAvocado profile image
SilverAvocado in reply to Hoop1888

Hoop1888, very nearly out is very bad! You need that number to be halfway up the range or higher to feel well! On thyroid replacement you want it right near the top.

It makes me so angry to hear of people treated this way :(

TSH110 profile image
TSH110 in reply to Hoop1888

Deffo not a hypochondriac! I believed that for years and I nearly died of untreated hypothyroidism don’t let yourself staRt slipping that way You should start on medication now and the GP needs to get that TSH UNDER 1

SlowDragon profile image
SlowDragonAdministrator

Ask GP to test for autoimmune thyroid disease by testing thyroid antibodies

Also yo test vitamin D, folate,B12 and ferritin

Judthepud profile image
Judthepud

I agree with MandyJane. I work in primary care too and in my experience GPs don't like to admit to being wrong. Try another GP in the practice and explain to them that you would like to try treatment for hypothyroid as your TSH is above range and you are symptomatic of hypothyroid. Good luck.

TSH110 profile image
TSH110

I felt dire with a TSH of 6 it really kept me messed up I did not feel well until it was below 1. It will be the cause of all your symptoms. I hope you can persuade your heartless GP to help you with some thyroid replacement hormone which you definitely need.

Hoop1888 profile image
Hoop1888

Thank you ALL very much for your responses. I am actually shocked but also glad because it confirms I’m not going mad. I just want to feel young and healthy as currently a shadow of my former self.

Next stop is the doctors. How long would treatment take to improve symptoms?

Marz profile image
Marz in reply to Hoop1888

I don't think anyone can answer you about the time it takes for symptoms to improve. Some take longer than others and everyone is an individual .... you need to be thorough and patient. 😊

SlowDragon profile image
SlowDragonAdministrator in reply to Hoop1888

It's a slow steady improvement. We can only start on low dose Levothyroxine, usually 50mcgs. (Unless frail, elderly etc)

It takes minimum of 6 weeks for each dose to be fully utilised

Bloods are retested after 6-8 weeks, and dose increased in 25mcg steps (retesting again 6-8 weeks after each increase) until TSH is around one and FT4 towards top of range and FT3 at least half way in range.

Vitamins need to be tested too and supplementing if need be to improve as well

TSH110 profile image
TSH110 in reply to Hoop1888

Very very slowly for me took 9 months to get optimised but I was very poorly indeed. I think 2 months is more like it normally, to get back to something decent. They do a blood test after 6 weeks as the levothyroxine has a long half life and will be at its proper level for that dose in that time. You will get increases every 6 weeks after blood tests until your TSH is between 0.2 and 0.5 (if your doctor is any good) and the free T4 and free T 3 are in the upper part of the range (often not tested for on nhs 🙄) and once you get to this you should feel well again 👍🏽😎🍀

Hoop1888 profile image
Hoop1888

Hi Guys

A wee update. I saw the doctor today as I’m struggling to cope with the breathlessness, being unfitness among other symptoms. I was dissappointed with the doctor as she fobbed me off and was adamant that my symptoms were due to anxiety and depression which infuriated me as basically I KNOW MYSELF!

I suggested that thyroid may be cause as it’s borderline and she then checked my levels again and saw that they weren’t normal. However, her attitude stank and she suggested I get another test in a couple of weeks ‘if It would make me feel better’

I walked out of there feeling like a complete idiot and my unwellness being completely ignored. Also made me feel like a hypochondriac....How do they get off with this?

Marz profile image
Marz in reply to Hoop1888

Read through your thread again and make some notes. Have you read all the links posted for you above ? Maybe with better information/knowledge you could fight your corner better in a calm way. Knowledge is power ! Also I asked you a question 18 days ago - which you did not answer - see above ! Private Testing ? That way you can have all the tests done that the NHS do not do - job done !

Many people have a tough time getting diagnosed - and thousands have the Private Home Testing done through Thyroid UK in order to be well .... SlowDragon above has also given you the link and the list of tests required - again you did not reply ....

Also on the Thyroid UK website is a list of Signs and Symptoms which you can tick - print off and show your GP.

sunsetalley profile image
sunsetalley in reply to Hoop1888

Visit another doctor...

DJR1 profile image
DJR1 in reply to Hoop1888

You must get your own tests done, I use Medichecks. Go for the best thyroid testing you can afford. You will get a report from one of the Medichecks GP. It will give treatment advice and you can take this to your GP. If your GP does not accept this move to another practice. You will only feel worse if you do not take action today! Some GP have no understanding of thyroid problems and this may be a surprise but they can damage people’s health. Take matters into your own hands and get well.

Maggiv profile image
Maggiv

Hi Hoop. I’m having the same problem with my doctor. At my next appointment I’m going to quote “NICE” guidelines as follows:

“If TSH is between 4 and 10 mU/L and FT4 is within the normal range

In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4. “

I don’t know if it will help but here’s hoping. Here’s the link to where I found this. cks.nice.org.uk/hypothyroid...

Good luck.

Hoop1888 profile image
Hoop1888

Thanks for all your help. I’m going to see about Medichecks and push on with this!

Hoop1888 profile image
Hoop1888

Hi Guys

I have another update from a blood test I got last week.

As I said before, my t4 and TSH levels were 11 (T4) and 6 (TSH) November 2017. Six months later they were 11.9 (T4) and 6.67 (TSH) so my TSH increased but so did my T4.

Three months later (now), my new results show tsh as being in normal range, all the way down to 3 (I fasted for the first time), yet T4 has gone down to 10. Doctor checked antibodies this time and said they are slightly elevated.

I’m confused as to why my TSH and T4 levels are varying directly with each other rather than inversely?!

Marz profile image
Marz in reply to Hoop1888

Sorry your post was missed - technically you replied to yourself :-) - easily done. So no-one would have seen it unless picked up in the News Feed !

Anti-bodies ? If you have them they can be the cause of fluctuating results ...

Hoop1888 profile image
Hoop1888 in reply to Marz

Thanks Marz :) Yes possibly. I started anti depressants 4 days ago as my doctor thinks it’s this that’s causing the symptoms so I’m trying it out anyway see what happens

Marz profile image
Marz in reply to Hoop1888

Oh dear that is very sad. I expect you know that having low T3 causes Low mood as does LOW B12 & LOW VitD. Gp's are well rewarded for prescribing AD's - but not thyroid meds.

Please write a new post with the results you posted above for advice. Your results are SCREAMING Hypo .... your GP is letting you down badly and AD's are not the answer. You are legally entitled to have copies of all test results so lets see those antibody results for real.

Read up on Kelly Brogan who has a lot to say about AD's and is a psychiatrist in the US.

T3 is used to treat mental illness so they do know the connection between the thyroid and the brain.

Heloise profile image
Heloise

Hoop, how are you doing? Did you switch doctors or did you get a prescription?

Hoop1888 profile image
Hoop1888 in reply to Heloise

Thanks H. didn’t switch doctors as I’m not convinced that they would do anything with my levels the way they are at the moment. My tsh level went down to 3.9 and it’s the first time I fasted with that blood test.

They did do an antibody test and found them to be elevated but no action, just a repeat test. I’m currently starting anti depressants to see if this makes any difference to my symptoms, that’s what the doctor seems to think it is...

Heloise profile image
Heloise in reply to Hoop1888

Hoop, glad to hear from you and happy to see your TSH went down. Have you any idea why? Sometimes it is just a matter of deleting gluten or dairy or adding some progesterone. Antidepressants actually will depress your thyroid further. Since you have already had some improvement why not try a few lifestyle change. Depression is part and parcel of thyroid because serotonin and dopamine are made in the gut by good gut bacteria and that is what we want to improve, hence avoiding triggers like gluten or dairy, sometimes corn and with antibodies, that means your gut is involved. Gluten looks similar to thyroid tissue believe it or not and tricks your immune cells to go after them both. You would be surprised how fast you can improve when you cut off the triggers. This man is brilliant and can explain things really well.

youtube.com/watch?v=SDphVgA...

Marz profile image
Marz in reply to Hoop1888

A TSH of 3.9 is still HYPO.

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