Thank you to the guys on here that have pointed me in the right direction. I just want to be the person I used to be. I can’t believe this disease has ruined my life. I hate the weight gain yet have no energy to do anything about it. I’m now 46 in the menopause and the light at the ending the tunnel is switched off
When hope has gone: Thank you to the guys on here... - Thyroid UK
When hope has gone
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Tldg45
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shawsAdministrator
Because hypothyroidism comes upon us extremely slowly, we are unaware that we are become unwell and may put it down to other things such as 'ageing' working too hard etc etc.
When menapause also happens at the same time we are not in a good place.
Don't worry too much at present by weight gain - the number one cause of symptoms on the forum. Many don't understand it is due to hypothyroidism and body slowing right down - everything in our body slows.
I shall give you a couple of links from an expert which might be helpful to you as it seems we have to read, learn, and ask questions as the Professionals don't always know best how to treat us, except by looking at a TSH result alone - keeping it somewhere in the range - even the top they think is fine when it should be 1 or lower. Neither do they test FT4 and FT3 which are more informative than T4 and T3.
hormonerestoration.com/Docs...
SlowDragonAdministrator
Ten months ago your vitamin levels were very poor
Are they now improved, have you retested?
Add results and ranges if you have them
Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?
If so, low vitamin levels are more likely
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
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. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
When also on T3, make sure to take last dose 12 hours prior to test.
Good morning SlowDragon,
My endocrinologist has taken me off thyroxine and treating me with liothyronine 20mcg morning and lunch and 10mcg in the evening. I'm yet to have bloods checked, due now. Last results serum folate 2.6 >3.9 serum ferritin 130 (30-150) B12 384 (197-771)free T3 3.3 (3.1-6.8) TSH 0.01 (0.27-4.20) free T4 8 (11-22) these bloods were taken whilst I was taking 200mcg Levothyroxine and 10mcg x 2 daily. Co sultans has taken me off HRT as he thought it was binding with my thyroid hormones.
Traceydg
It would be far better to start your own post. Not put this on some else's post.
However
Your folate is BELOW range
Have you been prescribed folic acid?
B12 is very low.
Your GP or endo should be testing for Pernicious Anaemia before starting either B12 injections or daily B12 sublingual lozenges plus a daily good quality vitamin B complex with folate in
There's no vitamin D test result
Ask GP to test or get NHS vitamin D postal kit £29
Ferritin is good
When any of these four vitamins are too low we struggle to use thyroid hormones. That includes T3
Do you have Hashimoto's. Have you ever had TPO and TG thyroid antibodies tested? If they ever were high you have Hashimoto's
If you don't know you need to get tested
Previously suggested you get vitamins and antibodies tested four months ago
healthunlocked.com/thyroidu...
I have mentioned to the GP about vitamins, antibodies and all the other blood test that you recommended. My GP just says they're normal, regarding folate GP wasn't concerned and suggested I buy some over the counter
Then you have two options
Find a decent GP and ask for testing for Pernicious Anaemia
Or self supplement B vitamins and self test vitamin D
As you already know you have low B12 and folate, supplementing a good daily quality vitamin B complex, one with folate in (not folic acid ) eg Igennus Super B complex. (Full dose is two tablets per day) Nice small tablets. Suggest starting with just one tablet per day after breakfast - certainly initially.
Or Jarrow B-Right is another good make - but is a large capsule (you can open and tip powder out if too large to swallow.)
Both are available online - eg via Amazon
Send off for vitamin D tested for £29 postal kit
Post back. They email results to you. start supplementing vitamin D. Ask advice on new post on here for how much you need
After 6-8 weeks on both vitamin D and B complex
Either do full Medichecks test £99 (offer price £79) or Blue Horizon do similar test
This tests TSH, FT4 and FT3 plus both TPO and TG antibodies plus vitamin D, B12, folate and ferritin
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Come back here with full test results on a new post for advice on next step
I feel that I don't live anymore I just exist waiting to die
mumbleslowly , I see that you've been with us for about 2 years, but you have never posted a question, or told us anything about yourself. Why not post an introduction and tell us your problems? Give us all the details : results and ranges, dates and doses - and let's see if we can help. You shouldn't be feeling like that. 
sorry I am down at the moment but here goes with my medical history 1987 benign pituitary tumour ,although I was told I couldn't become pregnant again I must have caught with my last egg tumour rapidly grew back so I had an early casaerian section 26 jan 88 and a further tumour removal but the tumour continued to grow so had craniotomy march 88 the previous two had been transfenoidal,had radiotherapy which burnt part of my brain (they gave me twice the amount of rads but it was judged to be ok so no compensation) which left me with severe short term memory loss 4 years later I was diagnosed with severe fibromyalgia which I was told would just disappear after a couple of years , I still have it 26 years later ,I have constantly seen endocrinology as I also have hypothyroidism as a result of the tumour and have never felt well since about 10 months ago I had a minor heart attack but was told it was ok now and had a follow up with cardiology and again was told my heart is ok,then in December I had a major heart attack and had a stent fitter as an emergency and told my vein was 99.9 % blocked although strangely I have borderline low bp and during my heart attack my heart rate was around 26 bpm ,I alos had a brain aneurism clipped in 2016 I was told I would be in hospital for approx. 3 weeks I had the op it lasted from 8.30 until 17.30 {I woke in resus as they were trying to put the tube back into my throat as they couldn't get my core temperature back up but had inadvertently pulled out a very large tooth and were pushing it down my throat and if I hadn't woken I would have choked }since then I can barely open my mouth and have a large dent in line with my eye which is nowhere near the aneurism site when I questioned my neurosurgeon he avoided the questions and sat inanely grinning, I have a further aneurism and are currently awaiting the results of a c.t scan so see how much it has grown, so to be honest im broken x
oh and I have unexplained weight loss for 6 months , I have lost around a stone so im expecting addisons disease or cancer
Oh, dear, that is a terrible story. I'm so sorry you've had to put up with all that.
So, you have Central Hypo due to the tumour? Do you have any blood tests results you can share with us?
If so, can you copy and paste your story above into a new thread and give the results and ranges, and tells what you're taking by way of medication.
The reason you should put it in a new thread is that not many people are going to see it, here. And, also, it's better to have your own thread so that replies don't cause confusion with replies to the original post by Tidg45. Because it can get very confusing. One subject per thread, is what we like to see on here.
It makes me terribly angry reading this. The thing that comes to mind is sue the damn doctors!
mumblestory. I hope u feel better soon. God bless you
Flip u sound as if u described me there. Only I’m 48. My thyroid loves to give the doctor the runaround. Always telling me it’s within range.
I’m increased last week to 175mg levthyroxine
Along with iron medication as they say my bloods are too low.
This thyroid has me so overweight and tired and not wanting to go on I actually have been so low I phoned lifeline on Sunday. I’m sick of people saying sure ur on medication for it, it should be fine and then they come off with names of people that they know which irritates me more. The safest place I feel is in my bed.
Why r people so ignorant to thyroid truths
You need to looking at using T3. Also beforehand look at your adrenals.
I'm currently on T3 50 mcg daily, stoped taking thyroxine as per Endo. Can I ask what you mean about adrenals?
How do I get them checked. Plz
Shaza-1970
Ten months ago you had lots of helpful info on this post, from Marz especially
healthunlocked.com/thyroidu...
Your folate was below range
B12 too low
No vitamin D test
No ferritin test
No thyroid antibodies tested
Have you had these tested and what supplements are you taking
Hi there.
B12 I believe they said was 145 could be wrong but that rings a bell as they said it was ok. Had been placed on a folic acid tablet.
Ferritin is iron is it not.
Which was ok according to them then. But two weeks ago I was placed on iron tablets as my blood were low. They tested me for celiac disease, which said was ok.
when I go to toilet I’m passing some of my tablets undisolved so therefore it doing there job they’re meant to do.
Was sent to endo but he just increased thyroid back then for 3 days a week. Now on 175mg 7 days a week.
What other vitamins and supplements are advisable and when’s best to tak them all.
Thanks.
I’ll also look out previous advice
Look out all your thyroid and vitamin results and make a new post with all test results and ranges
Thanks will do when I get a chance to go round to doctors. They are useless and just tell me satisfactory over phone.
Ring and request a printed copy of your blood test results. You need to allow a couple of days for them to organise (they have to get ok from GP) before printing
They can not legally refuse (or charge you for them either)
I’m sorry you are feeling so low and desperate.I have been in this place and it went on for ages. I was on 13 medications. For me the breakthrough was trying to take back control and I started with diet. Slowly. I cut out gluten and dairy, did all the vitamin, adrenal, full thyroid etc tests. Worked with a good functional nutritionist and an excellent endocrinologist.
Read up, find good people to work with and get those blood tests done. You WILL start to feel better and better and feel more in control. I am now on 3 medications and am on NDT and am starting to feel glimpses of joy. I have also lost 3.5-4 stone.
In my experience GP’s are not much help with the finer workings of the thyroid so you need to be a detective to get to the root causes (dr Izabella Went’ books are excellent)
Good luck and please don’t give up as things can start to turn around pretty quickly
Totally agree with you Rubyru. The NHS definitely doesn’t go in for fine tuning. Take control of your own condition. I have a few friends none of whom are prepared to do that. They are never well but they just go on miserably with what ‘the doctor says’ and they do nothing to help themselves.
None of these friends know any of their test results and look at me as if I’m odd because I have asked if they do. In fact they don’t even know what tests they have had and they say their doctors always say their results are ‘fine’. Even my husband was amazed at the attitude of a close friend when we were away with them recently for a week. He couldn’t believe it. They aren’t even prepared to try anything that might work. I just don’t understand them.
If you don’t take responsibility for your own health and try some of the things that people here have suggested then unless you have an exceptional doctor then you are doomed. Patients, and not just thyroid patients, need to start questioning their doctors - you don’t need to be rude or aggressive - rather than just having things done to them. Getting better might take a while and it might be hard work but at least if you are Involved in your treatment you are less likely to feel so hopeless.
To the OP I’d say follow Rubyro’s very good advice on tests and diet and don’t give up because once you’ve cracked it you’ll feel a lot better.
It’s down to this group that I questioned my GP. Dr only interested in TSH, I paid to see an endocrinologist who prescribed T3. His attitude was that I would be very fortunate if we were in a famine as I’d survive due to having a very slow metabolism. He also said I was a medical conundrum 🙁
Stop paying that idiot that masquerades as an endo - what stupid things to say! And spend your money either on someone who knows what he's talking about, or on buying your own hormone and self-treating. He obviously knows nothing about thyroid!
Good heavens! What a complete joker! Words almost fail me. Think you need to find the list of thyroid friendly endo’s from ThyroidUK sack that plonker and either find someone decent or else do what GG recommends and what loads of others on here do and use the money for private blood tests and self treat.
Hi Ruby...coyld l ask where the Endo and nutritionist are please? Which area do you live in?
Thanks xx
Hi Sophiethecat
I don’t think I can name consultants here but the one I go to is on the thyroid uk list. I live in Brighton and he works st an nhs hospital in nearby county and only visits Brighton area weekly. I also use a functional nutritionist just outside of Brighton. I’m not sure how to private message here but if you can get private message to me I can give you the names - if not , get the thyroid uk list if endos from the administrators here and work out which one he is, sorry if this is a bit vague but good luck - you CAN win back your health
I was deppressed for years but am so glad that I lived through it anddidnt just die as I so often wanted. I think I appriciate life so much more now than most people having not been able too for so long.
It's a mental as well as physical struggle to stand up for ourselves against so-called medical experts and challenge their limited understanding / training. I think it is sometimes easier to raise your eyebrows and shrug when you know that they are just trying to save face. However, we know on this forum that the whole thyroid 'package' is a lot more complex. If you don't like the thought of going it alone then the first step may be to look around for a GP who you can get on with and will look at any private lab tests that you are doing.
Hang in there. You will get a lot of support from this site. You are not alone.
To TLDG45:
Now that you have the T3 you should notice some improvement. Don’t be surprised if it takes a while (up to 6 weeks or longer). The functional Dr. that I see here in the states says it takes that long for our T3 to get there at the cellular level. In the meantime, try supplementing with Selenium, digestive enzymes / proteolytic enzymes for starters. The selenium will help with conversion of any T4 (even if you are not taking T4 you might still have some depending on where you are in the disease). My experience is that I have more energy whenever I take Selenium and either or both of the enzymes! It’s wonderful to get back some of the energy!! I learned about it here and pass it on continually. I lose weight (hard fought!) when I start the day with hot lemon juice tea (something to do with the liver - tblespoon lemon juice + hot filtered water). Weight is also reduced with gluten free or at least bread free. Did I mention it’s a hard fight?! In any case, you are on the right track and HealthUnlocked is a great place to exchange information and encouragement. So happy to hear you received T3! From what I hear that is a feat in itself in the UK. Please share your progress - we really are “all in this together”.
Please don’t give up! Take control of the situation and don’t let it control you.
Start with one baby step at a time. In addition to taking your prescribed meds, the next step is to review your diet. Eating clean and healthy will boost your energy level. Take digestive enzymes with each meal, which will help you to absorb the most nutrients from your food. Have your Vitamin D, B12 and Iron levels rechecked—low levels cause fatigue. Going gluten free and dairy free often helps the situation. It has helped me out tremendously.
Additionally, force yourself to get up and move. Exercise, walk, join a gym and use it! Engage in some type of physical activity at least 30 minutes each day and you will start to see positive results. Physical activity that raises the heart rate is potent medicine. I practice what I am preaching in addition to taking Armour Thyroid, and I am doing so much better than in the past.
Try again! Look at all the support and advice here and see what else you can do/change/try. I have managed a wonky thyroid for decades and am continually learning. Be kind and gentle to yourself - your body is doing its very best. Post often here as people all want to offer help and support. My own top tips are look at diet....go gluten-free for a while, digestive enzymes will help gut health as will probiotics. Try some of the dairy alternatives and again see if you have intolerances. And self-treatment and advice from private doctors - if you can. I have found the gps not too good with thyroid issues!
All the best.
xCarole
Strength and Sympathy for you . It's awful to feel down and under . But you've come to the Best place for support and help . Being Hypo can makes us feel just this way . Have you had recently labs done with your thyroid markers FT4 TT4 FT3 TSH .Vitamin "D", B-12 /folate, Iron /ferritin .
SlowDragon has Excellent posts on going Gluten Free /Dairy Free . It's been so HELPFUL for many of us . You might want to support your adrenals with Vitamin "C" a good B-Complex and some Celtic Sea Salt . And when you get your Strength back you might to try to do some exercise even if you just take walks . You would be surprised how much better it makes you feel .
Wishing you Better Days Ahead .
I’m no expert , but I can send you love hugs and good wishes , please don’t give up x
❤️❤️❤️❤️.xx
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