No diagnosis, yet, but why? : This is part... - Thyroid UK

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No diagnosis, yet, but why?

Sarah-epieikes profile image
45 Replies

This is part introduction, part rant! I've been reading up on the forum and am so glad there is somewhere I can ask my questions and have them taken seriously. Thank you for being here!

My story is that I've been concerned about my thyroid for several years. My mum has hypothyroidism. I've had PCOS, infertility, recurrent miscarriage, carpel tunnel syndrome, depression, anxiety, glucose intolerance. And over the past 3 years I've struggled with intense fatigue, weight gain and repeated, slow to shift chest and ear infections. It has been a battle! I've got 3 small children now, so I've been pushing through but aware this depth of mental and physical fatigue isn't right. I've pushed for blood tests to see whether it is hormonal, a deficiency or, as i suspected, hypothyroidism. 

On Wednesday I visited the gp, to get some test results. And I only just looked into them further this evening. I'm hoping to pick your brains over whether it's fair for me to feel upset and angry. I only remember 2 of the numbers from the last test in Feb, and I'm having bloods done next week, so I realise my information is incomplete, but I feel misled. I've been told repeatedly that my results are normal, despite my symptoms,and I've been struggling on ,and forking out, self-medicating with supplements just to survive. But, after research, these numbers seem to the stretched side of ok :

TSH: 4.3

T4: 14.8

Please put me right if you think I'm over-reacting. I'm so tired of this weariness, and might be deceiving myself that there is a nice pat answer, whereas I'm actually just lazy. I'm past feeling embarrassed, and can take your honesty, so please tell me straight! 

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Sarah-epieikes
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Spareribs profile image
Spareribs

straight answer - you're probably hypothyroid, what supplements?

(deja vu moment as I could have written this) J :D

Spareribs profile image
Spareribs in reply toSpareribs

I should add have you got the ranges? as they vary from lab to lab - but I do know a TSH of 4.3 means your pituitary gland is kicking your thyroid to produce more hormone - my range is to 5.5 which is still "normal" (lols ironically as 'they' don't treat 'til 10 - feel free to growl) 

- looking up my T4 range as I forget easily - is that free T4? (then it's 11-23)

(low vit D, low iron and low B12 can mess up thyroid function).

Sarah-epieikes profile image
Sarah-epieikes in reply toSpareribs

Thanks for your reply! I'm working on just those 2 numbers at the moment, and the fact the gp said both were right at the high end of the range. I think there was more on the screen, but i didn't know what I was looking for at that point! I'll be asking for my full medical notes... 

Supplements are entirely my own combo after researching managing my depression/anxiety off anti-depressants. 

Vit D3: 5000iu (bit worried this is too much but it keeps my spirits up) 

Jarrow B-right complex

Magnesium malate: 850mg

Omega3 - high dose

Multibionta multivit

Then I've been taking a probiotics tab and 2000mg black garlic because I've been on antibiotics so much with these repeated infections. 

Spareribs profile image
Spareribs in reply toSarah-epieikes

supplements sound fine to me - if you're worried about Vit D have a look at the grassroots site or vitamin D council - I took 5000iu daily for a year to get levels up (kept my spirits up too - also empowered/sorting myself out!) it's not just me either.  I do recommend vit D testing so you know where you are (GP probably won't test) e.g. city assays B'ham home test kit...

vitamindtest.org.uk/

The main/active thyroid hormone is T3 but they won't test it if TSH and FT4 are within range (again unless you pay for your own tests) have a good look around the TUK site - looks like you're on the right track to feeling better, keep questioning...   J :D

machineman profile image
machineman in reply toSarah-epieikes

The anti-biotics they give out are not all they are cracked up to be they work on boosting the adrenal glands and one day the adrenals can just give up.

they say you should only take anti-biotics twice in your life, they also deplete vitamin B6 chiro.org/nutrition/ABSTRAC...

notice how the institute cover up how bad the depletion effects are when they had proof back in 1960 that antibiotics can cause diabetes within 48 hours and can cause diabetes though the Xanthurenic pathway fasebj.org/content/29/1_Sup...  if you do not get enough B6 to replace what you lose.

Thyme oil is a known safe replacement for antibiotics  articles.mercola.com/herbal.... the omega 3s can be got from purslane which has the highest natural omega 3s and calcium in an absorbable form that there is nutrition-and-you.com/pursl... calcium In milk is not absorbed by the body due to the lack of picolinic acid as well as the animal product being acidic which would require calcium being donated by the bones to neutralise the acidity which it has to do with the vitamin D3.

The vitamins you buy need to have the right Valence (the valence of an element refers to the number of elements to which it can connect)  there are very few vitamins you buy that are effective as they need to come from natural food or food that has not been changed by hybridisation or genetical modification when you get natural food it has other elements in it which increase the efficiency of the vitamins, there are some vitamin manufacturers that grow there vitamins but it is way more effective to grow or buy your own food from heirloom seeds or buy food that has been grown naturally and no chemical fertiliser, the fertiliser contains polonium and when the fertiliser has been washed in citrate this enables the roots of the food to uptake the polonium eating this food is exactly the same as smoking cigarettes as the thing that kills you from smoking is the polonium,

 fluoride is also a chemical that is derived from chemical fertiliser production captured in the smokestacks this is sold to the government instead of the companies having to pay to dispose of it safely, here is a small overview of its dangers it also casuses autoimmune diseases and skeletal fluorosis it increases cavities on average 20% and stops ameloblasts coating the teeth with enamel in infants  

chemistry.harvard.edu/files...

and is the main cause of hypothyroidism, fluoride blocks iodine uptake and attacks peroxide enzymes that are needed to bind with the iodine and take it into the thyroid gland.

virtually all water contains fluoride due to the use of toothpaste whether it is added into the water supply or not as the aluminium oxide that the water companies use to clean the water does not remove it,

If you want to learn more about natural food and healing yourself you tube Dr Sebi.

Travelling profile image
Travelling in reply tomachineman

I agree that overuse of antibiotics is not good, but as someone with currently poorly controlled asthma and recurrent chest infections and wheezing, they are a Godsend when needed! I think it's important to support overall health with food and supplements but sometimes antibiotics are necessary.

machineman profile image
machineman in reply toTravelling

Have you tried genuine Vitamin C to treat asthma there are lots of testimonials online.

 Amla berry or indian gooseberry is the highest natural form as well as having other benefits taiyointernational.com/pres...

also you can buy a cool mist humidifier and when you go to bed fill it with a litre of 3% food grade hydrogen peroxide, this creates a hyperbaric oxygen chamber while you sleep. also try silymarin tincture in a tea made from slippery elm bark, silymarin has so many uses in the body and combining it with the elm bark gets more of it into the liver,

it regenerates your liver balances your heart rate is an anti-inflammatory,

you can buy amla berry in dried form from most indian grocers you use distilled water to rehydrate it.

Travelling profile image
Travelling in reply tomachineman

Thanks for those suggestions machineman, I will look into them. My asthma is aspirin-allergic asthma and it doesn't behave in the way "regular"asthma does. I am sure that my vitamin and mineral status is poor though and the hypothyroidism can't be helping. 

Another issue is Irrtable Bowel Syndrome which means I can't cope with fibre in anything but very small quantities. This makes even supplements difficult to manage as the gut symptoms from them , especially B vits, can be significant. It's all a balance!

Any ideas for fibre sensitive gut healing? 

machineman profile image
machineman in reply toTravelling

slippery elm bark coats the intestines and allows them to heal it also has B2 and Magnesium suziqi.nl/2013/03/21/health...

 which are 2 of the 4  nutrients needed to regenerate the villi the other 2 are B6 and B9, the elm bark is best left to work for a couple of hours as when you eat  afterwards it removes the elm bark from the intestines,

No Grains unless you know they are natural.  

 until I came across Dr Sebi I thought cayenne herb also helped regenerate the villi and it may be worth trying a small amount an eighth of a teaspoon in one cup of boiled pure water then allow it to cool down to body temperature,

Although Sebi says Cayenne is manmade  there are successes with this in aiding the heart and stomach I am going to get in touch with Sebi to find out exactly what he means but his successes speak for themselves, although his way is not the only way and I have had some success with curing cancer but that was with sodium bicarb and Iodine and not food I also helped one guy cure his GERD within a day where as the doctors had been trying for 2 months, coconut and distilled water was helpful for this as well as adhering to the food guidelines I have given you.  

Fluoride attacks your pancreatic enzymes which makes digestion a lot more difficult

you can use sodium bicarbonate to brush your teeth and pharmaceutical grade is better than food grade due to the mining impurities left in it like mercury lead and arsenic.

 Kefir is another essential for replenishing the bacteria in your stomach and nutritional yeast this also creates butyric acid as well as the B vitamins

 ncbi.nlm.nih.gov/pmc/articl...

and a small amount of Glacial Acetic acid say half a teaspoon in a cup of water.

if you can source the red rose potato then squeeze the juice out of it and drink some of this red rose was the original potato 

Do not eat after 6pm, only eat small meals, for breakfast have a vegetable broth only,

only heat your food to 40c you destroy the enzymes that aid digestion within the food above this heat,

   have a bath not a shower (if possible) due to the positive ions and elimination of serotonin from the blood stream, also the inhalation of chlorine gas from the shower damages your lungs.

if you cannot filter your water as it comes into your house buy some sodium thiosulphate from ebay and add that into the bath water this will neutralise most of the chemicals in the water except chloramine which is the new way for screwing us over and getting round the evaporation of chlorine there are 14 water companies in England that add this into the water and a google search will show what ones add this.

air fresheners contain phthalates which are toxic to your lungs even the energy saving lightbulbs contain mercury and should be replaced with full spectrum   cdn.preterhuman.net/texts/s...

 

Travelling profile image
Travelling in reply tomachineman

Thanks Machineman, that's a very comprehensive overview! I will try to make some changes where I can. I would like to help the gut issues with natural remedies if possible. I had heard about the usefulness in this regard of some spices and herbs. I do have a lot of trouble with grains, especially while wheat which I avoid like the plague, I have wondered about gluten free too but life is too busy at the moment to do this properly. Thanks again and regards! 😀

bluebug profile image
bluebug in reply toSarah-epieikes

If the doctor is giving you antibiotics for repeat "infections" they are fobbing you off.

They need to find out why you have these repeat "infections".    As most of these "infections" will be viruses and antibiotics don't do anything for viruses like colds.

 In fact by giving you antibiotics they are helping to ensure if you have something like a dental infection the antibiotics won't work for you. I don't take antibiotics as tablets unless they are for teeth, bone or deep tissue injuries. Topical antibiotics for skin and eye infections are different.

They need to do a full blood count with haemoglobin, ferritin, vitamin B12, folate and vitamin D tests. 

Any deficiency in one of these will leave you more open to getting more colds,  other viruses and being run down so having skin and eye infections. With a knackered thyroid as well you have no chance of your immune system keeping you well.

As already said if the doctor refuses to test you for all these then you need to pay for private testing. 

Btw the full blood count helps your ferritin, b12 or folate are within range but low as deficiencies can affect your red and/or white cell. If you go down the private route the full blood count isn't necessary as people on here know more about nutrition than most doctors simply because we are concerned about being healthy rather than just treating illnesses. 

Sarah-epieikes profile image
Sarah-epieikes in reply tobluebug

Thanks, I've questioned the wisdom of the antibiotics, but some have been for serious outer and middle ear infections that were so painful I just needed them gone. It seems nobody has an overview when the hospital prescribe and the gp gets the records dawdling in. I'll certainly be taking that up in the next appointments. 

bluebug profile image
bluebug in reply toSarah-epieikes

Where the antibiotics prescribed by ENT? One of the  first things an ENT medic should ask you is "Do you have any conditions you think are causing this?" They are aware that other illnesses cause ear and sinus problems,  and if they are treated you will come back with possibly worse issues.

Sarah-epieikes profile image
Sarah-epieikes in reply tobluebug

Yep, I've had antibiotics prescribed in ENT and my gp has no record of it more than a week later. I don't doubt they were necessary, but I wish there had been more looking at my history and taking a long term view. It felt like nobody had any oversight. And no, no questions. I told them about the diabetes and depression and it was as if they found that enough. 

Travelling profile image
Travelling in reply toSarah-epieikes

Sarah-epieikes, I agree, the docs are using antibiotics appropriately. It's always good to try to improve overall health though as you are seeking to do. I had six middle ear infections in six months as a young adult, very painful and I'm sure there was some underlying problem as I never had these as a child. Keep fighting for your health! Good luck!

HarryE profile image
HarryE in reply toSarah-epieikes

Ear & throat infections are common with thyroid issues, I had both very severely

Travelling profile image
Travelling in reply toHarryE

Interesting as my thyroid issues hadn't surfaced completely then, but the ear infections were totally out of character,

Marz profile image
Marz

I think you need the complete thyroid profile testing - TSH - FT4 - FT3 and the thyroid anti-bodies - Anti-TPO and Anti-Tg.  If you have raised anti-bodies then you have Hashimotos and could well have in range TSH - FT4 - FT3 - I did.  Can you have private testing done through Thyroid UK ....

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

There is a testing bundle in the link above that will also include Ferritin - Folate - B12 and VitD I believe. 

Hope you soon find some answers and get the treatment you deserve.  Your TSH looks too high and the FT4 too low - needs to be nearer the top of the range.  Please ensure you always have the ranges and retain copies of all your testing so you can monitor your health.

waveylines profile image
waveylines

I agree with Martz.  

There is a history of hypothyroidism in your family. One of the symptoms of a thyroid failing is repeat infections. I had flue twice in three months and had to be off for a whole month both times! Your blood results look just like mine did when my thyroid was failing. And I felt absolutely dreadful. Eventually my TSH slipped a 1/10 higher into the positive range and hey presto I was formerly diagnosed -ridiculous that such a tiny raise in TSH after all that suffering made THAT difference. This is how bonkers the management of hypothyroidism and its diagnosis has become.

Stick to your guns. Ask for copies of ALL blood tests -you are entitled to them. And keep a file so you can show trends. At the very least your GP should be doing three monthly blood test repeats.

Re vit D. Make sure you are taking D3 with K2. The K2 ensures the calcium is going straight to your bones and not being deposited elsewhere in the body. The vitamin D council recommend that you have periodic blood tests Your GP CAN do these as  vit D deficiency is very common. The vitamin D Council says 5000iu is a safe amount to take daily. Have a look at their website they have useful advice and guidance. Also Greassroots do too. 

Lastly you might want to invest in a couple of books about hypothyroidism to gen up so you can argue your corner with the GP. Thyroid Uk have a list of books and a library of ones to borrow for a small fee.  Knowledge is power.... 😊😊

Sarah-epieikes profile image
Sarah-epieikes in reply towaveylines

Thank you. I'm definitely going to gather all my weapons, sorry, information, for the next appointments. Do you have any advice over the private blood tests? I'm naturally stingy but if throwing money around will get a significantly better outcome, I'll do it. 

HarryE profile image
HarryE in reply toSarah-epieikes

Blue Horizon, Genova & Medichecks are all ones I have used. GPs have been known to poo poo results from private labs, so it depends if you are expecting them to act on them or not. But I can assure you that all labs in the UK are accredited in the same way & by the same organisations & there is no reason to suppose their results are in any way inaccurate (I work in a lab).

I self medicate & get all my own testing done, usually using the finger prick kits to save having to get someone to take blood for me.

Ruthi profile image
Ruthi

You are entitled to a copy of your test results.  Just ask the receptionist for them. Then post them here for a more educated and in depth commentary.  We aren't doctors,  but some of us have been dealing with all this a long time. 

But TSH of 4.3 is hypo in my book.  

Sarah-epieikes profile image
Sarah-epieikes in reply toRuthi

I checked by phone that thyroid antibodies are being tested on Wednesday (they are)  and asked to have printed copies of my previous blood tests. That was an interesting conversation.  I have to talk to the dr about it apparently because they only like specialists to see them 😕.  

Ruthi profile image
Ruthi in reply toSarah-epieikes

Its your legal right to see your entire medical record, let alone just your blood results

ico.org.uk/for-the-public/p...

And you do not need to give a reason.

Scorchio profile image
Scorchio

I too could have written this & was being fobbed off that TSH 4.68 was fine, so ended up going down the self treating route & took thyroid & adrenal supplements. 

HOWEVER, I didn't feel any better after doing so. 

After much deliberating, I recently took a 23&me genetics test & my results (you wait 3 months to get them) have been eye opening! I have all sorts of genetic mutations, including MTHFR (compound hetrozygous), COMT (homozygous), various dodgy CBS, VDR (relates to vit D) etc, etc. This has led me to research into 'methylation' (under or over?), mineral deficiencies & metal toxicities (it can be hard for lots of people to eliminate metals if they have mutations in the genes which are linked to detox pathways), pyroluria etc. I now know that the route to my issues lie somewhere in this tangled mess & am doing what I can to eliminate the crazy amount of copper I have in me before I manage the rest (I too have pcos & have had cycle issues all my life, as well as estrogen dominance & copper can stack up after each pregnancy if you have detox problems). Google copper toxicity in relation to your symptoms & causes, as well as the other things. 

Definitely worth looking in to. If you have issues in these other areas they can put serious stress on your pituitary, which make your otherwise healthy thyroid & adrenals struggle. 

I wish you luck 🍀

PS if you do discover you have any of these issues, there is a wealth of info on the various related Facebook forums for those issues which may be causing you a problem. The Walsh Institute, Dr Ben Lynch, Dr Amy Yasko etc are also good places to find info 

Sarah-epieikes profile image
Sarah-epieikes in reply toScorchio

Thanks - interesting that my symptoms really took off after my last pregnancy, a girl. My first 2 kids were boys. I've speculated that my body didn't cope so well hormonally with having a girl, but it was just instinct, and given that I was older and had the kids close together, there were sensible alternative reasons. 

Scorchio profile image
Scorchio in reply toSarah-epieikes

My symptoms started after I stopped feeding my last child too (now 4y old). I used a lot of gas & air in that labour & hadnt in others. I now know that nitrous oxide flips on mthfr gene mutations & can dangerously deplete b12. I also now know that certain vitamins to try & correct b12 deficiency (which I've been taking in abundance!) are making me worse. I need to avoid folic acid like the plague plus even folate, also niacin. Knowledge is power!

Heloise profile image
Heloise in reply toScorchio

Hi scorchio,  you mentioned that self treating did not improve things for you and since the doctors were not helpful,  what has made the difference?  Are you under someone's care?  And are you not taking any thryoid support at all? 

Scorchio profile image
Scorchio in reply toHeloise

I saw Dr Peatfield initially, but am now booked to see someone at The Olive Tree Clinic in London as I think my thyroid issues are more a side effect than a root cause. 

I was on naturethroid & nutri adrenal extra, but have stopped both as they weren't helping 

Heloise profile image
Heloise in reply toScorchio

Thanks you, Scorchio.  I agree that thyroid issues are rarely a thyroid gland problem but something that is affecting the thyroid gland.  This man tries to explain that having a holistic view is far more logical.  In fact he feels that no organ per se is to blame for disease.

I hope the Clinic figures this out for you.

youtube.com/watch?v=T_Re4ja...

Sarah-epieikes profile image
Sarah-epieikes

Wow, thanks everyone. I'm reading and digesting and getting  used to how the forum works but the overall feeling is that this 4.3 number indicates that yes, there is a problem. I'm feeling so much more shocked. I've known there was a problem. I've said it. My youngest child is 3y now and for 2/3 of her life I've been ill with these chest and ear infection. The last ear infection cycle lasted 9mo. Even with all this, I've known the fatigue was more than is normal, but because I've also had a really bad run of depression, it's been written off as part of that - another facet of the stigma of mental health. I feel so destabilised to think that with proper treatment I could have been the non-suicidal, healthy mum my kids deserved. 

humanbean profile image
humanbean in reply toSarah-epieikes

The first thing you need is some information about yourself i.e. previous blood test results.

1) Always go to the surgery to discuss this at a non-busy time. Don't get angry, be polite and friendly. The receptionists don't make the rules.

2) Take 2 proofs of identity. You'll need something with your address, and something with your picture e.g. a passport or driving license.

3) Ask your surgery for online access to your medical records. You get given a sheet of paper with various codes on, and instructions on how to register.

4) Once you've registered you might be seriously disappointed. The things people get access to are a) making appointments and b) ordering repeat prescriptions (if you have any). We are all supposed to have access to the coded information in our medical records too, including blood test results. That is the sticky bit though. Only a few people get this access. Many surgeries are dragging their heels.  You might be one of the lucky ones. If you are one of the majority though, it won't be available. If it isn't available then do the following ...

5) Ask your surgery for copies of any blood tests you've had over the last 3 - 5 years. You need the numbers and the reference ranges. If you are lucky they may print it out for you there and then. Most likely though is they will need to get permission from a doctor and that probably won't happen on the spot. Ask when it would be convenient for you to pick up the results. Ask how much it will cost. Don't forget your proofs of identity each time you ask about this. Getting a few sheets of results shouldn't cost more than the cost of the paper and ink - no more than £1 or £2. If you have any difficulties, or they try to rip you off, then come back and tell us about it and we can give you more suggestions to break the deadlock.

The other thing you need is a complete set of thyroid results and some results for vitamin and mineral levels. You can do this privately with finger-prick testing :

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

On this site homebloodtests.co.uk/ the following are the best tests to get for thyroid :

Thyroid Check Plus Six

Thyroid Check Plus Ten

On this site bluehorizonmedicals.co.uk/ the following are the best tests to get for thyroid :

Thyroid Check Plus Six

Thyroid Check Plus Ten

Thyroid Check Plus Eleven

Thyroid Check Plus Twelve

All the above tests require finger prick blood samples, except for the Thyroid Check Plus Twelve. That needs a full sample from the elbow, so you would need to get someone to take blood for you. Some NHS hospital phlebotomy departments will take blood for private testing purposes for a fee. That fee varies wildly, from nothing up to £30. Phone up and ask. Check that you can get someone to take blood for you before you order the test.

In your shoes I'd go for the Thyroid Check Plus Eleven. All the instructions and kit you need to prick your fingers, lancets, vials for the blood, where to send the blood etc are posted to you when you order the test, and you can then do the test when it is convenient for you.

The best time for thyroid testing is first thing in the morning before breakfast. Don't eat or drink (except water) until after you've done the test.

Once you have your results (they are emailed to you), write a new post on here and give us all your results. We'll give you feedback on what you can improve and how to improve it.

Sarah-epieikes profile image
Sarah-epieikes in reply tohumanbean

This is so, so helpful! Thank you! I'm going to try for blood test results as far back as possible, because I know I was first tested back in 03/04 when I was "diagnosed" with infertility. Think I have any chance? I'm not sure it's wise to know anyway. The emotional scars might be better undisturbed. 

humanbean profile image
humanbean in reply toSarah-epieikes

You might find it useful and easier to ask for a copy of everything in your medical records, whether it is on paper or on computer. This would cost £50 (which is the maximum chargeable by law at the time of writing). A full copy obviously takes quite some time for the surgery to do, but they have to do it within 40 days (or perhaps respond within 40 days I'm not sure).

I finally bought a copy of my own medical records a couple of years ago. I've never regretted it, and I wish I'd done it years ago.

I did the whole thing by letter (which I delivered by hand, and stated I had done so on both letter and envelope).

My letter wasn't the best one I've ever written, but it did the job :

Dear Sir/Madam,

I wish to make an application for copies of my medical records under the Data Protection Act 1988. I would like to see all of my records in all formats, and also wish to be supplied with photocopies of everything. Please could you let me know what the fee will be and send me your application form.

I look forward to hearing from you.

Yours faithfully

I don't recall ever filling in an application form so perhaps the letter said everything necessary. If you want to google about it search for "medical records subject access request".

bluebug profile image
bluebug in reply toSarah-epieikes

Don't blame your child's sex or having children for your thyroid issues. Due to your family history your thyroid would have been knackered anyway at some point.  (Unfortunately for all your children they are going to have to keep an eye on their thyroid levels as adults.)

Also depression is actually linked to nutrient deficiencies and metabolic issues as well as lots of illnesses. If you feel cr*p then it's not surprising you get depressed. 

in reply toSarah-epieikes

Once you have any hint of anxiety or depression noted on your medical records you seem to be doomed of ever being taken seriously again. Any physical problem however genuine is written off as anxiety in my experience. I am a lot wiser to it now. But getting rid of the prejudice is an uphill battle. If I visit the out of hours doctors they don't have access to my medical records with  these subjective comments about me on and I can see how differently they treat me and how much more matter of fact and serious they are about my symptoms. I am glad at least I have realised what happens behind the scenes if they decide you have anxiety or depression because at least I can warn my children about the stigma. You don't know until you have experienced it. You think they are doctors prescibing and diagnosing these conditions so you never imagine, or at least I didn't until I wised up, that there is so much prejudice behind the scenes.

I am struggling with trying to increase my vitamin D level which was about 40 at the last count. Vitamin D is so important but the doctors don't even mention it. It wasn't until I got on to healthunlocked that I realised it. 

I asked the doctor to test my stress response as I was getting exhausted and dripping sweat at the slightest stress during physical work  but he wouldn't because my early morning cortisol level was normal at 400. 

Cutting out certain foods has made me much less irritable. Even minute amounts of maize starch affect me. 

I too have brought my kids up with undiagnosed conditions written off as anxiety/depression when I had no reason to be depressed. 

I do sympathise with what you are saying. 

My kids are teenage now and I am determined to enjoy life from now on; taking charge of my own health not relying on the doctors to get it right.

Sarah-epieikes profile image
Sarah-epieikes in reply to

The stigma is persistent, even when mostly hidden. So much of your post resonated. I have felt like some kind of crazed hypochondriac, keeping finding other things I want tested because at the root, i knew something was wrong. I feel like i get knowing glances when i talk about my health, because I'm good at pushing through and put on a convincing face : I was suicidal for 8mo and when it had passed, people were shocked and (I suspect) didn't really believe me.  I do think that makes me vulnerable to the idea of a magic solution though, so I feel I have to be super-cautious. 

in reply toSarah-epieikes

I think there should be a lot more research into possible physical causes for suicidal feelings (diet, vitamin deficiency etc ) rather than just accepting them as a normal consequence of depression. You just have to keep on believing in yourself to get you through, though. I have had to and it looks like you are doing a good job of doing so too. So good luck.

Worthwhile obtaining a copy of all of your medical records, info here:

nhs.uk/chq/Pages/2635.aspx?...

This could be really helpful and throw some light on your health.

greygoose profile image
greygoose

Hi Sarah, you've been given an awful lot of good advice here, but I would just like to add a bit about the suppléments.

'Vit D3: 5000iu,

Jarrow B-right complex,

Magnesium malate, 850mg

Omega3, high dose

Multibionta multivit'

Vit D, vit B12 and folate should really be tested before you start supplementing. But, if you find the vit D helps, carry on with it and get tested anyway.

If I were you, I would stop the B complex for a while, and then get the vit B12 and folate tested. Having been supplementing them will skew the results, but it will give you an idea. But, if you have really low B12, the B complex will not contain enough to compensate.

Magnesium is fine to take without testing - tests aren't very reliable, and most people are deficient in magnesium, anyway. Plus, the body excretes the excess, so... How did you decide which magnesium to take, because there are a lot of them?

Omega 3 fine to continue taking - as far as I know. But, forget the multivit! You are just wasting your money on that. There are three basic flaws with multivits : 1) there's not enough of anything to treat a true deficiency; 2) there are things you Don't want/shouldn't take without testing; 3) there are things lumped together that shouldn't be taken together because they cancel each other out. So, what you end up getting from a multivit is very, very little for your money. And, they aren't cheap, are they!

So, get tested for

vit D

vit B12

folate

ferritin

These are the most important ones from a thyroid point of view.

When you start supplementing, introduce one supplement at a time. Don't start taking a whole bunch of stuff at the same time. See how you feel on each one for a couple of weeks before introducing the next one.

Once you have those four optimal, you can then think about other things, like zinc, and selenium, etc.

Remember that doctors know nothing about vitamins, minerals or hormones, so you're not going to get much help from them! So, carry on researching. In the end, you'll know much more than they do! :) 

Sarah-epieikes profile image
Sarah-epieikes in reply togreygoose

Thanks! I've been told my d and b12 levels were fine previously -  "within range" though I am no longer sure whether to trust that. I supplemented anyway after much reading around because the fatigue was so bad and the depression too. It definitely helps. Missing 2 days leaves me jittery and low. I know it would be best to do one at a time, but I'm scared to lose the benefit when i feel like I'm only just making it through daily life better. 

The magnesium, I researched and found lots of descriptions of how different forms help in different ways. Can't remember all of it, but I think malate was indicated for fatigue and there was maybe forms called taurine or picolinate that i considered as well but either couldn't find, or the cost was too high. 

I took the multi Vit mainly because of the minerals, because i haven't researched enough to know whether what I'm taking means others need bolstering. I feel like there's so much to learn, but it's hard to balance using my time and energy needing to understand to get better but keeping going in the meantime!

Cyclegirl profile image
Cyclegirl

In the USA they would give you thyroid meds if TSH was not 3 or below. (Good doctors)  I would try to get synthroid or levothyroxine. With your history I am guessing you are hypo.

HarryE profile image
HarryE

You're not over reacting - when my TSH was 4 I was on my knees, half dead & off sick for 4 months. In most other countries you would have been treated but the barbaric guidelines put out by the BTA mean that doctors won't often treat until your TSH reaches 10!

This diagram helps explain

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

Heloise profile image
Heloise

Sarah, no, you are not over reacting, in fact your patience is to be admired.  This is a notorious policy of not only the NHS but all over the world.   They've allowed so many people to struggle (I'm surprised you are on your feet with a TSH over 4.  The U.S. has reduced the range for TSH but the UK obstinately uses up to 10 as their target.  It is so awful, law suits have been suggested!  Hashimoto's is a complex and progressive condition which affects every cell in your body.  We really have to be more demanding but it's difficult when you are conditioned to think you can rely on doctors.  That's a mistake in this case.  As you learn and educate yourself, you will realize how little they know so don't let that stop you from persisting. 

I haven't personally used Blue Horizon but other can advise you and they have a package for all the thyroid lab tests you can check out.  I don't know if anyone has mentioned all the other basic tests you may need if you have been lingering with this condition since other nutritional elements can also deteriorate.   stopthethyroidmadness.com/l...

I think there is a list of cooperative GPs here on request.  Sorry, I'm in the U.S. so I can't help with that.  As you can see, many people are willing to assist so keep asking for what you need. 

Eddie83 profile image
Eddie83

A GP will say you are "normal" when your TSH is anywhere in the range.  Which is too broad.  It isn't uncommon for TSH to drop BELOW range when the patient is properly treated.  But the bottom line here is ... you cannot be properly diagnosed with just a TSH test.  If you have primary hypothyroidism and the doctor doesn't do at least FT3 and FT4, diagnosis is indeterminate.  In fact, advocates say that the minimum set of tests you should have is: TSH FT3 FT4 rT3 TPOAb TGAb.  Chances are good your hypothyroidism is due to Hashimoto's; which is why you need the *Ab antibody tests, to determine if you should be diagnosed Hashi's.

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