Is this normal? : Hi guys after help from some... - Thyroid UK

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Is this normal?

Rosie2m
Rosie2m
103 Replies

Hi guys after help from some lovely people on here yesterday and also seeing the dr yesterday and her admitting that I have subclinical hypothyroidism (tsh of 9.7) I had a bit of a meltdown yesterday. Has anyone else felt this way? I feel relief that I now know what is the cause of all the problems I’m having but also distraught at what this means potentially for the future, worry about how long and painful this journey is going to be and how it’s going to affect my life. It all seems so complicated to understAnd and if I’m honest I feel a bit lost. So many people I’ve spoken to just say ‘well once your on Levo you will be fine’ (I work in pharmacy at a hospital btw) I feel a bit alone tbh. Is this normal or am I being massively over dramatic? Xx

103 Replies
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Hylda

Your not alone, we’re here! I’m not an expert, they will be along soon but we are all here for you.

Rosie2m
Rosie2m
in reply to Hylda

Thankyou Hylda. I’m sure lots of people feel the same, maybe it’s hormones or I’m just not mentally in the right place to deal with this right now. It’s affected me more than I thought :( xx

Feltbetterbe4

It’s difficult to feel “in the right place” because your thyroid issue actually makes you Feel in the “wrong place”. Personally, I suggest you try to get on the NDT right from start and skip the levo altogether! You’ll save yourself a lot of trouble! For me, without the addition of t3 (which a small amount is in the NDT and totally absent in the Levo) I suffer greatlyyyy mentally and physically. You’ve come to right place for guidance. There’s many knowledgeable members here anddd at the very least, everyone is super supportive. Wishing you well on this confusing journey~

alchemilla12

I dont think you should make such a sweeping statement regarding levo.There are plenty of people who get on fine with it -Im one of them and as the OP is already feeling overwhelmed , such negativity re the medication she has been prescribed is only going to stress her out even more. she should see how she gets on with the levo first to my mind...

I see now that she hasnt been prescribed anything yet but my comments still stand re scaring her off levo

Ladyb1
Ladyb1
in reply to alchemilla12

I’m on Levo and have been for over 20 years, I’ve had a few glitches when the dosage has been changed but the gp I have now is amazing. She treats me not the condition, she realises I function better when I’m a little bit “ over” rather than prescribing what my blood results dictate

Rosie2m
Rosie2m
in reply to Ladyb1

I’m really hoping that I can have this sort of relationship with my doctor but I fear this may not be the case, she’s been very blasé about the whole thing and it took me breaking down in her office and producing printouts of my blood results and info that people on here had given me before she would agree to get the Ft4 test done. She isn’t really open to suggestions of much at all, hopefully over time I can change her mind or she will just give me what I want to shut me up lol. X

Ladyb1
Ladyb1
in reply to Rosie2m

Can you change your GP ? Ask around, even a different GP in the same practice. I hope you find someone you feel comfortable with, it makes all the difference.

Thor63
Thor63
in reply to Ladyb1

Hi, glad to hear these words gp treating your symptoms not blood results, I have had the same comment after 6 years of total misery, so unwell and diagnosed with chronic fatigue, numerous specialists, when seeing privae gp recently he did bloods but stated on first appointment he knew I had thyroid problem after listening to me. Just started levo so being very optimistic about having some sort of life back again, if you have any comments of your experience I would be very grateful. 😊

Feltbetterbe4

I’m glad you are doing well on levothyroxine alone. That has not been the case for me, hence my “personally” reference. As The OP had not been prescribed anything yet, it was my suggestion as both a Nurse who’s witnessed patients regain their lives when prescribed t3 in addition to Levo and as a patient that plummeted herself on Levothyroxine alone- I stand by my suggestion of starting on the NDT right from the start if at all possible.

alchemilla12

and I respectfully disagree

Feltbetterbe4

you are entitled to an opinion as am I. A singular approach Is definitely NOT the name of the game when it comes to hypothyroidism and that thought process- that Levo should be the beginning and end for all patients is what is making and continuing to make many of us sick. The fact we have to beg doctors to prescribe, and/or self source alternative medications (NDT, t3) in an effort to feel well is a major problem. I’m glad YOU feel well on Levo, really I am, but I sure as hell wish someone had mentioned NDT to me right from the very start because it’s most certainly worthy of mention. The OP has expressed her gp is not very cooperative so it appears to be a moot point.

alchemilla12

my point was that she hadnt even been on Levo to know how she might get on and so to suggest it would not be the best option is to my mind bewildering for her.As many people have said , 80% of people do fine on Levo alone - why should she not be one of those?

Feltbetterbe4

Not to beat an already dead horse, but because it is “bewildering” to you why I would suggest she start right off on NDT, I will play along. “Many” people have not already said “80% do well on levo” a single person stated it, and frankly, I believe that statistic is grossly inaccurate. It doesn’t take too much of a search here on this site to find that in fact, It’s the near opposite. People are currently continuing to struggle on Levothyroxine (t4) only- with a scattered few- such as yourself that are doing wonderful on it. it would certainly be interesting to do an informal survey to get an idea of the correct percentage of patients that are thriving on T4 only- one done in the spirit of listening to patients themselves rather then a big pharm pushing their BS down our throats. My Doctor and I had an interesting conversation the other day- we had this thought “what if people who are put on antidepressants for depression and anxiety really just have an underlying sub clinical, or underlying thyroid issue? And/or need a little t3?” - we both were silent for a few moments because the thought is haunting. At any rate, To be fair- NDT is not the end all -be all for everyone either and theres many other factors involved in being optimal (vit d, vid b, folate, cortisol levels etc..) But, I stand by my belief that t3 in some form or another (either by itself or in conjunction with t4 ) is where “feeling well” is at for most patients.

alchemilla12

my post said it would be bewildering for the OP as she was obviously suffering confusion and anxiety as to what she was going through. If you re read all the posts there are a number of people all doing well on Levo.

you pointed out to me previously that the OPs GP was uncooperative -so they are hardly likely to start her off on NDT so it seemed to me to be an unhelpful suggestion for the OP who is already confused..

Im not denying T3 may well be very helpful -but as she is just starting the thyroid medication journey why not try the more commonly available treatment first..it does help many people

Obviously the majority of people on this site are going to be the ones not doing well on standard treatment - they probably wouldnt be on here otherwise.

vocalEK

Would you be getting along fine on levo if they didn't let you have it until your TSH was over 10? And if you were on levo, your TSH was 9.6, and the doctor told you that you were fine on that dose, would you be getting along fine?

It's not the disease per se that is so horrible, but a medical establishment that insists on a TSH of 10 before treatment is provided that is horrible. And a medical establishment that ignores your symptoms, preferring to treat your lab test result instead.

And it's true that 80% of patients get along fine on levo. But it is also true that 1 out of every 5 hypothyroid patient is NOT getting alone fine, and the medical establishment has guarded T3 as if it were the King's Gold.

alchemilla12

thats not the point of my post -the OP didnt need to be further scared by telling her that the medication she would probably be put on would not help.Her post did not indicate at the time that her GP was refusing to give her any medication until her TSh was over 10 - that was something she shared laterand that is nothing to do with whether Levo will help or not

vocalEK

Gotcha.

alchemilla12

??? no idea what on earth you are talking about ,please elaborate

alchemilla12

oh I think I understand your " Gotcha " now - do you mean you understand what I was originally saying not "gotcha" as in caught you out ? :) i have been pondering on what you could have meant by that for ages and only just twigged what I think you meant...

vocalEK

Sorry for the confusion. In this context, "Gotcha" meant that I understand what you were talking about.

alchemilla12

all good -thanks :)

Lalatoot

No you are not alone. This is a common feeling. But you will get plenty of help here to get you on the right track.

Buddy195

Hi Rosie2m and welcome to the forum.

So many of us relate to how you are feeling. It is tough to get your head round having a thyroid condition and you simply can’t take all the information in at once. Things will get better when you get both your thyroid medication and vitamin levels optimal. For many of us there isn’t a quick fix, but you will get lots of great advice and support from forum members. Hang in there and keep posting! 😊

Rosie2m
Rosie2m
in reply to Buddy195

Thankyou. I feel so conflicted, the dr says one thing, the internet another and I just want to feel better. I’m worried how I’ll ever know if I’m doing the right thing. I’m currently having a gin wondering if I’m even allowed to drink lol. I’m obviously aware that my lifestyle and diet are going to have to change drastically to get me feeling my ‘best’ but genuinely I just think this is going to take me a long time to accept. I normally gym 5times a week and I’m reading that exercise over a certain level is bad :( Also hard seeing how blasé everyone else is about the condition. I’m going to look into the vitamin advice slow dragon gave me because if it can help then I’m willingly going to try it. Just feel like I need some support that it doesn’t look like I’m going to get from my friends or family :( Thankyou for responding xx

Hylda
Hylda
in reply to Rosie2m

Rosie I’m 76, have had an under-active thyroid for many years and can still walk 5 miles on a good day. Just listen to all the advice you are given and you will progress.

galathea
galathea
in reply to Rosie2m

I’m in my 60’s, have been hypothyroid for over 30 years, on Monday i gardened for three hours, came home, grabbed some lunch then went out on the sea with my paddleboard for a couple of hours.

As many as 85% of people do fine on levothyroxine. The rest if us get to forums like this one and work out how to get our vits and minerals balanced and tweak our meds.

Get your antibodies measured ad give up gluten. Have you been prescribed levo?

If not, why not? And yes, you are allowed to drink. However being hypo seems to affect how you handle it. I used to get drunk very easily and get megga hangovers. ( Made me a cheap date!) Am fine now though...

Xx

Rosie2m
Rosie2m
in reply to galathea

I’m waiting on antibody results to come back, my dr won’t treat me with levo unless my antibodies come back showing something or the ft4 comes back with something (having the test Monday) if they come back in normal range it’s a case of waiting til I go over 10. Given that my level has raised from 7.11 to 9.7 in just under 3 months I don’t imagine it will take long. I’m glad to hear that it’s possible I will feel normal again and able to do everything I love. X

galathea
galathea
in reply to Rosie2m

Tsh is generally higher in the morning, have tests done as early as you can.

Xx

Rosie2m
Rosie2m
in reply to galathea

Yes some of the others have mentioned that and to not have anything beforehand except water, I feel sorry for anyone who comes into contact with me before I get to the coffee lol. Although looks like it’s best to stop drinking that too 😬 x

Lora7again
Lora7again
in reply to Rosie2m

I can only have 2 cups of coffee a day and cannot drink coke or much alcohol either because it makes me hyper.

Cloggie2013

Yes, several cups of strong normal coffee makes me hyper as well and could trigger fib. For that reason I am drinking mainly decaf coffee and love that Especially Senseo or even better Nespresso does some excellent decaf coffees. My days begin with 75 micro grams of Levo and a cup of Senseo decaf coffee. Happy times!

Cloggie2013

By the way, I drink decaf coke as well. The Coca Cola in the golden cans are decaf and sugar free.

SlowDragon
SlowDragonAdministrator
in reply to Cloggie2013

Levothyroxine should not be taken anywhere near drinking coffee.

verywellhealth.com/coffee-a...

Any Dairy products affect absorption

endocrineweb.com/conditions...

This may be why taking Levothyroxine at bedtime may be more effective

Artificial sweeteners may affect gut bacteria

livescience.com/63743-artif...

Lora7again
Lora7again
in reply to Rosie2m

The test should take place as early as possible hospitals usually open at 8am for blood testing which is perfect for you. Don't eat before the test just drink water.

Karenk13
Karenk13
in reply to Rosie2m

Rosie2m I'm hypothyroid and go to the gym 5 times a week I'm also a PT so I can understand your worries people told me here that I shouldnt train as much as I do but once my medication level was right I've had no problem at all training. I just need to watch my iron now as it is chronically low from both the Hypo and being vegetarian.

Dont resign yourself to a lifetime of sickness you may have your ups and downs along the way but living an active life is 100% achieveable

Rosie2m
Rosie2m
in reply to Karenk13

Thankyou Karen, all these positive posts have really managed to cheer me up :) don’t get me wrong I’m happy to take it a bit easier if it’s ‘better’ for my health but I also need to do enough that I get my good endorphins regularly or my kids might grow to hate me lol xx

waveylines
waveylines
in reply to Rosie2m

There are professional athletes who are treated for hypothyroidism out there...... there is no reason why you cannot exercise as you have before once you have got your meds optimised. Whilst that is occuring you may have to reduce temporarily to allow your body to adjust to the meds & get your metabolism speeding up. Note the word temporarily.

Think its real bad of you doc not to start prescribing straight away. Quibbling over .3 is ridiculous, especially as your other test results show a clear deterioration. What is the matter with these doctors??????

Sending you big hugs xx

FancyPants54

The trick to hypo and exercise is not to do it whilst you are in the position you are in now. i.e., suffering the effects of hypo but not medicated for it. I'd drop that gym time down to something that won't deplete you further for a while. Once medicated and feeling well you can do as much as you like.

Buddy195

Hi, Keep doing the things you love-it’s so important, I love spin and Pilates & am able to do both. You just need to listen to your body and if you don’t feel up to the gym some days, go for a walk instead or simply rest. Also, remember that although you will probably choose to make some dietary or lifestyle changes (following advice from forum members more knowledgable than I!), it’s important not to do too much at once, otherwise you won’t be able to monitor how effective they are.

Rosie2m
Rosie2m
in reply to Buddy195

Thankyou buddy, I haven’t done ANYTHING exercise related for 6weeks due to labrynthitus and I’m still unbalanced slightly and that has been putting me off returning. I may try a spin class as I normally do one and just see how I feel. Thankyou for your advice, I unfortunately am the sort to implement everything at once and then fail miserably in about 2 weeks time as I’m trying to do too much lol xx

Buddy195
Buddy195
in reply to Rosie2m

Totally understand as Ive been the same.

I started spinning more as I couldn’t run as much as I used to. I also started Pilates - which is great for your mind and body!

You will get so much great advice on this forum, but give yourself time to take it all in. I find it useful to keep a diary of how I’m feeling and what medication I’m taking etc - it’s useful to look back on.

Look after yourself and keep posting- we are here to support each other!

SlowDragon
SlowDragonAdministrator
in reply to Rosie2m

Ask GP to test your B12 and folate levels.

Dizziness is frequently low B12 and very common when hypothyroid

Rosie2m
Rosie2m
in reply to SlowDragon

Slowdragon, on payday I’m going to order the test that you said. I feel my dr won’t order those tests for me as she has brushed off concerns of me needing to boost vitamins at my last 2 appointments. At least that way I can try and self boost correctly x

SlowDragon
SlowDragonAdministrator
in reply to Rosie2m

See what comes back from next tests

Ask for B12 and folate to be included in test on Monday

Rosie2m
Rosie2m
in reply to SlowDragon

I’m not having the test done at the drs and already have the form, I don’t imagine they will add it on at the blood testing place will they. I’ve just looked at the b12 link you’ve sent and some of the symptoms are scarily similar to what I’ve been suffering!

SlowDragon
SlowDragonAdministrator
in reply to Rosie2m

Low B12 is incredibly common when hypo .....but easily fixed

Is it possible to tick B12 and folate on the test form? If not, request they are tested when you see GP later this week

There are almost 2 million people in the UK on Levothyroxine.....vast majority do fine .....make good recovery

All the wide variety of symptoms can all be a bit daunting at first, especially when feeling poorly and doctor not being overly helpful

Come back once you get your results

Rosie2m
Rosie2m
in reply to SlowDragon

Unfortunately it’s a printed request so no boxes otherwise I would have. I’m sure I’ll be fine just overthinking it all I suppose. I will repost when I get them. X

Nanaedake

Go easy on exercise until your thyroid levels are back in range. You will simply run out of energy during a class if thyroid hormone is insufficient. Maybe do something gentle for now.

The point of taking thyroid hormone is to become symptom free so once on the right dose of thyroid hormone life will get back to normal. Thyroid hormone may fluctuate from time to time but you'll learn to manage it. If you continue to have symptoms then you need to explore other factors. Checking vitamin levels now is essential.

Rosie2m
Rosie2m
in reply to Nanaedake

Thankyou, I’ll definitely take it easy until I feel more like my normal self. After some advise yesterday I am looking into increasing the levels I have been advised to, it’s all an awful lot to take in.

Lora7again
Lora7again
in reply to Rosie2m

It will take a while until you feel your normal self with a TSH that high. Why oh why do Doctors let us suffer?? When I had a TSH of 9 my hair was falling out and I was bedridden. How are you feeling? Strangely enough I used to work for the NHS and I also worked in a hospital pharmacy ordering the drugs. It was very large pharmacy with 3 clerical officers I was a senior clerical officer and and had 2 colleagues to assist me. We were responsible for making sure the Principal Pharmacist and all his staff had admin assistance which included placing orders with drug companies and making sure there was enough drugs for wards and small cottage hospitals in the area. I enjoyed my job and learnt a lot about drugs from my boss and his colleagues. I would use your position in the pharmacy to get help from the pharmacists who will know which brand will suit you and what is available when your incompetent Doctor finally realises you desperately need levothyroxine he should start you on 50mcg and test after 6 weeks. The dose should then be increased until your TSH is about 1 and your T4 and T3 are in the upper third of the range. I know more about thyroid disease than some Doctors having studied it for 12 years since I was diagnosed with Graves' Disease. My Doctor kept me ill for many years and even suggested it was the menopause instead of treating my TSH of 0.002 (suppressed) which meant I had an over-active thyroid.<political statement removed> Sorry to ramble on but as you can see I am awake at this time of the night because of this horrible disease!

Rosie2m
Rosie2m
in reply to Lora7again

Hi Lora7again, as you can see I’m also having sleep problems lol! I currently have ALOT of symptoms and am struggling tbh. Having had Labrynthitus for the last 7weeks has not helped at all either although some people seem to think that it could actually be symptoms of thyroid and not labrynthitus at all, I’m unsure. The pharmacists are very good and actually seem to be some of the few people I know who will actively argue with drs if they think they’re wrong so it is useful that I have these people around. I really hope you do manage to make them listen to you and help the thyroid community:) xx

Lora7again
Lora7again
in reply to Rosie2m

Yes it was useful working in a hospital my husband was the Patients Services Manager there and he had a lot of influence over Doctors regarding our treatment (perks of the job). I wasn't suffering with thyroid disease then because I was 25 years of age. I am now 60 but feel about 40 because I am in remission at the moment. I have just finished wrapping my Christmas presents and about to start on my cards. It feels great to have so much energy but I know my body will crash sooner or later so I am making the most of it for now.

Lora

Lora7again

Also Pharmacists know more about drugs than Doctors having studied them at uni for 4 years.

Rosie2m
Rosie2m
in reply to Lora7again

Oh my, u are organised! I’m glad you’re feeling great, definitely make the most of it :) x

JaclynB
JaclynB
in reply to Rosie2m

My Tsh is 6.70 right know and I feel dreadful. What symptoms are you feeling?

Rosie2m
Rosie2m
in reply to JaclynB

Aching hands,feet and legs, cold all the time feet especially, very tired, periods all over the place, memory issues, headaches, dry skin, the list goes on. I’m also into my 7th week of recovery from Labrynthitus... although it sounds like this to be linked to the thyroid 🤔 x

JaclynB
JaclynB
in reply to Rosie2m

You described my symptoms exactly When my TSH finally went over 4.00 I started feeling weak all over and I started getting pains inside my joints it even hurt to move them. I then started getting a very bad achiness in my back. I told my husband I thought I might be fighting some kind of flu or bad unknown bacteria infection because that how bad I have felt since May. I am very forgetful I always feel like I’m scatter brained I feel like a can only hold onto a thought for about a min before I forget it again. I also get these wierd rush feelings and get short of breath which from what I have read it is from adrenaline compensating for lack of thyroid. I also have had wierd head and neck pressure headaches. My Periods are now all over the place as well. I get so cold my hands turn purple I wake up with numb hands I also seem to get what I call blanket lines in my skin easily which I’m guessing is from fluid retention. I’m very scared at the moment because just the thought of walking far gives me anxiety because it’s so exhausting. Please let me know if you get achy that feels like a flu or if this sound similar

Rosie2m
Rosie2m
in reply to JaclynB

Yes I do get achy, some mornings I wake up and my whole body aches and i wonder what I’m coming down with next 😩 the headaches I get EVERYDAY, I have NEVER suffered from headaches so this is a big issue for me, they get so bad that my neck and shoulder start to hurt too I’m not sure if it’s because they make me tense.

JaclynB
JaclynB
in reply to Rosie2m

Yes the headaches for me started when my TSH went over 6:00. That’s when I felt like my head was being squeezed. And I recently had been treated for an inner ear infection. What a coincidence

HiddenThis reply has been deleted
thyroidmom84

I can really relate to this. I also read about how miserable Hashis can make people but then my endo and my gp acted like I was crazy for thinking it was more than taking a pill. The best part is when you start having symptoms that aren’t part of the standard 8 or whatever, they will tell you you’re crazy again. But you’re going to be ok, especially since you have this forum. It has helped me so much in the few months I have been part of it.

Lora7again

Thyroid disease can make you depressed and suicidal I have felt both. My Consultants response was to offer me counselling and antidepressants instead of treating my TSH of 9!! I refused and walked out on him and decided to self treat myself by doing private bloods and buying my own medication from Thailand (Thyroid S)

Rosie2m
Rosie2m
in reply to Lora7again

Makes me really question how these drs even got into this line of work as it really seems patient care has gone out of the window and it’s all about the cheapest way to get rid of people. So frustrating when they won’t listen. X

Lora7again
Lora7again
in reply to Rosie2m

Most Endocrinologists specialize in diabetes and know nothing about thyroid disease as you will find out. I have had to take my own health into my own hands with the help and support of sites in the US and here in the UK.

Elaine Moore is a good site with lots of information it is in the US

here is a link

elaine-moore.com/

thyroidmom84

This is so true about endocrinologists!

Rosie2m

It’s crazy isn’t it, If I didn’t go to my drs yesterday and highlight that I think it’s the thyroid causing all of my problems and that my level indicates that it’s a high possibility then I would have been left suffering because apparently my results were nothing to worry about. I genuinely believe it’s all about money and they will cut corners anyway they can! I’m so glad I’m not alone in this feeling xx

Lora7again
Lora7again
in reply to Rosie2m

It isn't about money because Levothyroxine is very cheap just check the price and you will see what I mean. It is about Doctors not being trained about thyroid disease and nothing will ever change I'm afraid. The only Doctor who helped me was Dr Gordon Skinner who helped lots of thyroid patients and was threatened by the GMC who I think caused his death (he had a stroke) but he died and there is no one I trust in the UK who can help me .... sad isn't it.

thyroidmom84

Cheap but also the most prescribed (here in the US anyway)

Lora7again

I read somewhere that if your ancestors are American Indians you will get thyroid disease because they suffered from starvation in the past. I am half Irish and a lot of Irish people have this disease because of the potato famine in Ireland where people were starving to death.

Rosie2m
Rosie2m
in reply to Lora7again

Ah, I don’t mean tablet wise, I’m aware how cheap levo is :) I mean all the testing excetra involved in getting proper diagnosis’s for people. I often think that’s why they try and fob people off because the cost of testing when people present with symptoms that are vague or mild in the drs eyes. Obviously I don’t have much experience in the thyroid area (yet) but I am aware from other health issues I have that they seem very reluctant to do anything unless it’s causing me severe issues. It is sad about the Dr, I imagine there is quite a few who probably know more or would like to help but feel pressurised and under threat if they were to so they probably just follow the exact guidelines for an easy life. Obviously I could be wrong, just my current thoughts. X

Salcheq
Salcheq
in reply to Rosie2m

I so agree, we need more GPs with more time to spend on patients, building relationships etc. I don't think most of them want to be unhelpful, they just only have the time and resources to focus on emergency cases. Let's hoping we get change soon, both better funding for more NHS and a way of attracting more staff into it!

waveylines

So right Lora! There is a cultural beieve in the medical profession that the TSH rules & complete ignorance over signs & symptoms. The TSH level for diagnosis used to be over 4.8 (still too high & missed people) but then they raised it to over 10. No research backs this level. I DO think its a money saving exercise - though a false economy as patients end up being treated for a hundred and one symptoms that would resolve with thyroid treatment alongside optimising specific vitamins.

I dont know how much the nhs pays for levothyroxine but apparrantly they pay £12 for paracetomol against our 40p in the supermarket!! (According to my GP) So it wouldnt surprise me if theyre being ripped off for thyroid meds too.

The NHS would do well to sort out there housekeeping rather than penalising patients.

Amz1987

My mum is hypo and has been for many, many years. She also had blood cancer and is still able to work and do all the usual things (she’s 58) and has been treated for cancer for the last 4 years. She does get tired easily but doesn’t let it get her down. I think it’s just getting your head around it and getting the right levels of Levo that works for you.

Good luck :)

Chippysue

Before taking any thyroid medication please read dr Isabella wentz books and watch the thyroid secret documentary series - you will be amazed!

You don’t have to take thyroid medication for the rest of your life!

Salcheq
Salcheq
in reply to Chippysue

Ooh, I'm going to watch that, thank you.

SlowDragon
SlowDragonAdministrator

Low B12 symptoms commonly include dizziness- like walking on a moving boat

Request B12 and folate are tested on Monday

b12deficiency.info/signs-an...

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

DeeD123

When it happened to me over 20 yrs ago I went into a deep depression. Me who was fit young and lived a full life had to take drugs to be able to live. Well first they aren't drugs they are hormones and second once on the right dose I carried on exactly as I had before. Admittedly I had a good doctor that treated by how I felt as well as bloods but that’s how it was. Most people do well on levo alone so I would see how you go before you start worrying. If you need more help then this brilliant community is always here. Good luck 😁

BeePurple

People do react when discovering that they or a family member has a lifelong, life changing condition. I can't say I really understand what it is all about myself and I was diagnosed a few years ago now. I'm with you. Lots of great advice here.

McPammy

Once you’ve had your tests due this coming week. I’m guessing it’ll be TSH, T4 and antibodies. Next time request to get your T3 checked also. If they prescribe T4 Levothyroxine for you, this medication sits in your body waiting for your body to be converted to active T3 hormone. T3 is the most important hormone!

I was diagnosed 12 years ago. My TSH was 36 at that time as the GP wouldn’t check my bloods just kept saying I had depression which I knew I didn’t. Anyways to cut a long story short, recently I found out I have a gene defect DIO2. This mean I don’t convert Levothyroxine to active T3 very well. Meaning I had lots of issues for 11 years. If they’d checked my T3 back 12 years ago it would have avoided years of mistreatment and I would have had a better life. Now I’m on T3 medication as well as T4 Levothyroxine and I can’t believe the dramatic and positive results it has brought to my life.

So please try and get your T3 checked also. It should be middle to top of the range. Also B12, Vit D, Ferritin and Folate are important to keep optimal in the range. Not just limping in at the bottom of the range they must be mid to high in ranges.

Once you are on Thyroid medication you should start to feel better quite quickly. I still can’t believe they won’t help until it’s 10 or over. Why make people suffer or wait in suffering it’s beyond me. I guess it’s the NHS stretching ranges to save money once again.

Slug_hater

Do hope you soon get some treatment and feel better. The range at my hospital for FT4 is 10-22. I kept being told I wasn’t hypothyroid as tests were normal as within range but very low. I was told I was depressed, was empty nest syndrome, my age etc till found understanding endocrinologist who realised my levels needed to be near the top of the range and my life improved. Although it’s hard sometimes we need to be very assertive with the Drs.

Salcheq

Hi Rosie, your post really struck a chord with me. I am told repeateadly that I am very healthy and there is nothing wrong with me. I finally took advice on here and got private blood tests, and turns out, I'm far from fine, and not crazy or imagining my symptoms at all.

After a few days of shock, I did read all the links given to me on here, and started a gluten free diet and some strong probiotics. I'm four days in, and still suffering in some ways, but wonderfully, the brain fog and depression has lifted a lot. I miss my exercise too, I would run 4 days a week, and usually walk at least 15k steps a day, but I've cut it to around 12k steps a day, no running and added in yoga/pilates dvds at home which also feels good. I shall start vitamin supplements as advised on here soon too, but I'm leaving that a while to see what impact the gluten free has first.

I have no idea what the GP will say this time when I show them my tests, but at least I feel like there is hope for a normal life now.

My advice would be to find some quiet time and read carefully all the links you were given by slow dragon.

Wishing you a peaceful and happy day.

Tennis_junky

It took a few months to get over the upset of being on a drug for the rest of my life. You will come to terms with it. There are millions of people who have to take a drug daily to manage a myriad of health problems. I was so ill for so long I’d forgotten what feeling okay felt like. I could barely walk down the road. Long process and my own research but now I don’t eat gluten, take a vast handful of expensive supplements every day. I can’t play three hours of tennis, but I can play 1.5hrs. I do have an energy dip by teatime though!. I chase sheep, I work in the cold then have a hot bath as I have no internal radiator anymore. I sing at the weekends. I’m wiped out the following day but I can do it. I don’t drink coffee. I do drink alcohol. I actually feel better on it and my memory comes back! You’ll find what works for you. This site is the best for sensible, balanced advice. The most important thing is it’s been picked up. I had to go back to the docs 5 times before they realised I was slowly dying in front of them. You can now focus on pushing for the right care and you will in time feel much better than you do at the moment. Read up on it as much as possible. X

waveylines

Maybe its nick picking but its a hormone not a drug. There is a difference. I do take drugs as well as my thyroid hormones but thats because I have another unrelated condition. I like to differentiate and also I think it helps my GP to see it as such.....something my body is lacking rather than something they are doing to me to supress or ameliate a symptom. Its my way of getting my GP to see it like insulin for diabetics -you cant survive without!! Dont know if it gets the message across or not but I like to think it does! Haha!!

Lora7again

nick picking? don't you mean nit picking? I get my words mixed up all the time it is all to do with this horrible disease

waveylines

Haha! 😂 Fair point......though I blame it on predictive.....lol.

Hope your word finding issues fade as your thyroid treatment becomes optimal. 🤞

Ashleyp

I had the same exact feelings when I was diagnosed. I was on my pills for 3 years and 1 day I said I dont need these anymore.... 3 months off and I've never felt worse. My bones hurt, my skin was so dry, exhausted 24/7 , my hair was brittle, I had 0 patients for anything...needless to say I'm back in medicine and starting to feel myself again!

Rosie2m
Rosie2m
in reply to Ashleyp

Oh that’s not good :( on a positive note at least you know the tablets really do work for you. I’d make rather take the meds if it’s going to change the quality of life I have. God to hear your starting to feel better :) x

BonnieG123

I think you’re having some emotions from relief and concern. Thyroid can also affect our moods. And it is true that once your thyroid levels are normal you will be much better all around. I was hyper as a teen and young mother but it reversed when I hit 40 and became hypo. I’ve been on synthroid for 30 years as it is lifelong. Good luck. I’m glad you have your diagnosis.

samaja

Two good reading recommendations to add to the lot

1) Paul Robinson's "Thyroid Patient's Manual"

2) dr John Sarno's "Mindbody Prescription"

Hope your will find them as useful as I did.

Best luck on the journey 8-)

AnotherLiz

Hello Rosie. As others have said - you’re not overreacting. Being hypo isn’t easy. Personally I’ve found levothyroxine helpful (diagnosed in 2009 but been hypo longer than that). What I also found made a big difference was to look at what I was eating and drinking. You’ll find lots of information on this site and elsewhere, but not from GP (based on my experience - no criticism of GPs, mine is very good) - they’re not experts on the condition. Things to avoid include chlorine and fluoride, soya, wheat/gluten for some people - I found my energy levels increased greatly after cutting out wheat. Also if you do go on Levo consider the time that you take. I take mine before I go to bed as I won’t have eaten since my evening meal at aprox 6.30pm and don’t have to wait in the morning to eat my breakfast. Also, better for blood tests as you’ve taken the meds the night before the day of your test. Good luck

Rosie2m

Thanks AnotherLiz, I have seen and been advised about the gluten free diet, it is definitely something I’m going to try. I’m not sure taking levo (if they actually give me any) at bedtime will work as I am known to be an evening picker but like everything else I’m going to have to make adjustments so maybe this is also something that will need to change. X

Eddie83

TSH=9.7 is not "subclinical". Your doc is showing her ignorance. Yes, there are some people who do get fixed when they are on a sufficient dose of levothyroxine. And, there are some people like me who can never get well on levo-only. I am intolerant (anxiety and insomnia symptoms) of levo at doses over 50mcg, so I add in T3 (liothyronine) at 17.5mcg to reach euthyroidism. Cases like this can't be treated unless the patient is attentive and assertive about symptoms, and the doc is willing to test both FT3 and FT4.

Another thing your doc should be looking for, is whether you have the TPO and/or TG antibodies present when the patient has Hashimoto's autoimmunity. Finding a way to lower antibodies, is necessary if the patient wants to feel truly well.

Rosie2m
Rosie2m
in reply to Eddie83

Thankyou, I am currently waiting on results on antibodies but apparently they take longer than the normal bloods and aren’t back yet. In the meantime I have to have another blood test tomorrow for Ft4 and tsh again so I will be checking my records to know what they are as soon as they are available. Obviously I will endeavour to help myself with this condition as much as possible and intend on asking you guys for a lot of help along the way. X

Eddie83
Eddie83
in reply to Rosie2m

Sometimes patients have to make their docs sit up and take notice, by getting aggressive with them. I trust you already know that measuring TSH and FT4 does not guarantee that enough of the T4 will be converted to have an appropriate level of T3 (active thyroid hormone). So if you aren't making progress within a few months and the doc seems perplexed, you might ask her why she has not tested FT3.

BTW, there are several minerals (esp. selenium and zinc) that are necessary for T4->T3 conversion. Using appropriate low doses of those, as well as other supplements, might help.

Rosie2m
Rosie2m
in reply to Eddie83

It’s all very confusing lol! I will however be trying to take in as much info as possible. I hope I will not have to get aggressive with the doctor, however I will take matters into my own hands tho if necessary and go in armed with my own test results so she has no choice to listen. It seems I may have to start working more hours to pay for all the extra vitamins I’m going to need, I’m guessing there’s not a magic vitamin pill that does it all lol x

CapnM

I'm 2 years on levo after pretty much grinding to a halt over five years. Feel great for now.

Here are my tips.

1. Keep a health diary

2. Allow the levo to stabilise, it takes a while. The initial kick in (around 2 weeks) can make a huge difference.

3. Your unique and so are your test metrics, symptons and recovery. Other people are only useful for broad comparisons.

4. Have a critical mind to healthcare advice but don't be your own doctor from day 1. You will grow confidence with your own experience and learning.

5. Use elimination approach, don't give up everything you read online at once. After levo stabilises next best priorities are probably vitamins and gluten. You don't want stress of giving up unecessary things or a lifetime of expensive unecessary vit supplements.

6. Look out for seasonal dips (e.g. Vitamin D in winter). I increase levo in winter.

7. Adapt. Turn consequences into opportunities.

8. Find someone to relate to. Moat non hypo people will struggle to understand your symptoms or your new evangelism in looking after yourself.

9. When ready exerercise appropriately.

10. Be patient the feedback loop to changes can be weeks/months.

P. S. I now play tennis 3 times a week and gym once.

All the best.

Rosie2m
Rosie2m
in reply to CapnM

Thankyou, the health diary is a fantastic idea! I have no intention of being my own dr (not with my brain atm) but I would like to gain enough knowledge to feel confident in what I’m taking about when I converse with them. I know this will take time. Gluten will be the first thing I tackle once my meds are sorted as I feel I’ve always had an issue with it anyway, just now I have a solid reason to try removing it. I won’t rush into it tho x

vocalEK

Good for you in having a meltdown when the doctor said you have "subclinical" hypothyroidism.

The definition of "subclinical" is "relating to or denoting a disease which is not severe enough to present definite or readily observable symptoms."

If the doctor continues to refuse to treat you, you might hand him or her your list of clinical signs and symptoms, and insist that your disease is "clinical", not "subclinical".

thyroiduk.org.uk/tuk/about_...

Rosie2m
Rosie2m
in reply to vocalEK

I did give her the list of symptoms that I printed out on the thyroid U.K. site and I ticked everyone that I have... she barely even glanced over it. She did however accept that given the rise over the last 3 months and my increase in illness that it was beneficial to do the Ft4 so whilst I came away feeling like I didn’t get the best outcome I am one step closer to getting treatment (hopefully) x

Alpsholiday

Hi Rosie

You're not alone!

If the docs won't help with tests, do consider medichecks?

Also, ALL meds are available to buy - legally

Levo, T3, NDT etc

I am on NDT, Thyroid S, sourced from Thailand

Good luck on your road back to health!

ALps Holiday

Catseyes235

Thankfully you will start to improve once you get to your optimal dose of levo but this will take a wee bit of patience. Luckily you’ve been caught at a sub optimal level which many doctors do not recognise. The majority of people on levo manage fine (I have for nearing 40 years) but a few like my daughter are better on NDT. Good luck and feel free to be dramatic ... but do express your fears to friends and family ... or on this site.

I wish, when I was initially treated, I had - instead of functioning ‘normally’ but inside feeling really scared and like I could die! The thyroid affects every cell and also your mind so having dark thoughts is part and parcel!

Astridnova

I'm in Australia and fortunately here they do not have ridiculous guidelines that require your tsh to be 10 or over! Mine was maybe 2, but I had huge obvious symptoms and signs of hypothyroidism. I found a doctor who tested my T3 instead of my TSH and those tests showed that I was very hypothyroid. Try to find a doctor who listens to you rather than her union, on the subject of symptoms. Good luck.

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