Please help - Hair Falling out, Fatigue &bso un... - Thyroid UK

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Please help - Hair Falling out, Fatigue &bso unhappy!! Been told to take Thyroxine but I am so worried, Can i take natural vitamins instead

Scconnor87 profile image
43 Replies

Please help...

I had a blood test last year around this time and my thyroid was fine. Unfortunately this year me and my family have had our fair share of many up's and downs... I lost my job to redundancy, and there have been quite a few family up's and downs and I feel like I have spiraled into a bit of depression.

I was sent for another blood test at the beginning of June 2016 and my blood test showed a slight abnormality with my thyroid and was told to retake the test beginning of September to see if it went back to normal in the hope of family life picking up.

Well, my result came back fine showing a big improvement with my thyroid but still is pretty much the same and my doctor not want's me to go on a low dose thyroxine.

I am so worried to go on thyroxine I have been told it can make you extremely overweight... I am tired all the time, my eye bags are horrendous, I have lost so much of my thick hair, i cant concentrate and feel like I have lost my way.

Would anybody by able to offer any advice into whether I can treat my Thyroid with Vitamin Supplements alone?

I have researched the below vitamins that are meant to help -

The B Vitamins - B1 Thiamine, B2 Riboflavin, B3 Niacin, B6 Pyridoxine, B12

Vitamin C

Vitamin D

Vitamin E

Magnesium

Selenium

Zine

Flaxseed Oil Supplement

I do not like taking medication and I have read so many threads where people have got worse from taking Thyroid medication (Thyroxine etc)

Is there anything I can do? Take instead of the above?

I miss having the energy, I miss feeling happy and healthy even under family loses... My hair used to get so many compliments but if I brush my hair clumps just fall into the brush!!

If you can offer any advice I would be so appreciative,

Thank you.

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Scconnor87
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43 Replies
Hellobarfi profile image
Hellobarfi

Hi

Please have a full thyroid panel done. The doctors only test tsh and t4 which does not give you the full picture. You need to check for low t4 & t3 as well as thyroid antibodies.

Blue horizon and medichecks have thyroid bundles. Basically you do a blood test at home or in clinic and send the samples off to a private lab who send you your results.

If you do a search on the forum there's alot more info kn where to get started.

You can also take thyroid support supplements( check on amazon) , but i wouldn't take them without checking for thyroid antibodies as alot of them contain seaweed/iodine.

Scconnor87 profile image
Scconnor87 in reply to Hellobarfi

Hi Hellobarfi,

Thank you for coming back to me, I fear asking for a full test from my doctor is just going to be pushed under the table.

I have pleaded with not only one doctor but three... I wish I had the money to may for the Thyroid bundles but I do not at present.

I have been looking at the normal vitamins that can help me but I just do not know if I am doing the right thing so I called Thyroid UK to find out they do not tend to man the phones, have emailed Doctor Izabella Wentz and I am still stuck.

I just feel so lost!!

I have been also looking at Silica supplements in the hope it might stop the hair loss :(

Hellobarfi profile image
Hellobarfi in reply to Scconnor87

Hi

I'm sorry to hear that. You could try the thyroid support supplements and see if they make a difference. They already have all the necessary vitamins minerals etc included to support your thyroid so you won't have to buy everything individually. Cost about a tenner last time i checked. I used to take the one by gaia herbs which was very high quality.

In the meantime please ask your doctor again to check for antibodies and if they don't help could you maybe save up for the private tests. Maybe 5£ a week( or whatever amount you can afford) until you have the required amount. About 80£ the last time i ordered.

Hope that helps.

Hellobarfi profile image
Hellobarfi in reply to Hellobarfi

Also the one advertised on amazon also have numerous reviews , so that should help you in making a decision aswell.

SlowDragon profile image
SlowDragonAdministrator

If they have not been done ......Suggest you ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

Also have you had thyroid antibodies checked? There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause in UK of being hypo.

Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.

When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

If you can not get GP to do these tests, then like many of us, you can get them done privately

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

Blue Horizon - Thyroid plus eleven tests all these.

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water)

If your tests did show you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

Once you have had vitamin levels checked (they may well be low) then supplementing may be enough to improve thyroid on its own.....or it may not. But you could try it and see.

Do NOT start lots of supplements at once. Start one at a time and wait about 10 days before adding another. (In case of bad reaction)

Do not start taking vitamin D, B complex or B12 or ferritin until levels have been tested (otherwise the test is meaningless)

You could start taking some vitamin c - very good for helping support adrenals if you have been/are stressed. (With zinc ideally)

Similarly selenium supplements may help thyroid (theory is selenium improves conversation of T4 to T3).

Most of us are low in Magnesium and magnesium supplements can help make you feel calmer too.

Scconnor87 profile image
Scconnor87 in reply to SlowDragon

Thank you so much for messaging, I really appreciate it!! I am waiting on my doctor to call me... I am going to put forward and request more tests.

I can only hope she will give the go ahead, I understand in the UK the thyroid test is so basic... They should test for Vit D, B12, Iron, Magnesium, Zinc, Iodine, and Antithyroglobulin Antibody (TGAB).

I do not understand why they don't just test for this along with the thyroid test?

You sound like you know so much more then me :) and I am struggling to gain assistance from the doctor.

They just seem to want to put you aside and prescribe Thyroxine, but have not told me the advantages or disadvantages and if I should be taken any supplements to help me along the way.

Scconnor87 profile image
Scconnor87 in reply to SlowDragon

Is there a test that can test everything at once? x

annie-7 profile image
annie-7 in reply to Scconnor87

There are these two tests, both fingerprick postal tests.

mythyroidchecks.com/test/th...

bluehorizonmedicals.co.uk/e...

Scconnor87 profile image
Scconnor87 in reply to annie-7

Thank you Annie!! I could hug you :)

Going to see if I can get these ASAP!! I am still waiting for the doctor to call... Its 17:34 still not call so I doubt I am going to hear anything.

With these tests, do they inform you of what you should do next if they show abnormalities/problems?

annie-7 profile image
annie-7 in reply to Scconnor87

You get results by email, any result that's out of range will be highlighted. People on this forum will be happy to interpret the results for you. Then you can go to the Docs armed with the correct info!

Scconnor87 profile image
Scconnor87 in reply to annie-7

Doctor just called I have autoimmune thyroid disease

Doctor wants me to start on the lowest dose of Thyroxine and see how I go... Any supplement advice or warnings will be most helpful!

I feel stress has played a huge part in to how my thyroid is playing up.... Its just so strange that it was fine before all of the bad thats been happening!

Doctor said Thyroxine is the only thing that can treat autoimmune thyroid disease.

So no supplements will help and I will gain loads of weight with thyroxine?

shaws profile image
shawsAdministrator in reply to Scconnor87

There's absolutely no need to panic. It's good you have been diagnosed as the Thyroid Gland produces the most important hormones which enables everything in our body to work efficiently, heart, brain, metabolism, etc.

Some people put on weight at the beginning as 'unexplained' weight gain is a common clinical symptom and when they reach an optimum of levo or other thyroid hormones, the weight should begin to reduce. It's only when doctors don't listen to their patients pleas about remaining clinical symptoms and their metabolism is still low but you and we on this forum have had to learn a lot from each other.

Most of our members know far more than doctors or Endos, unfortunately so they will help you get back to good health.

Common symptoms are low pulse and low temp. amongst the 300+ and thankfully we don't get all of them :)

Do not be afraid of thyroxine (also known as levothyroxine) it is not medication it is a hormone replacement and you should gradually be worked up to a dose which makes you feel well and relief of all symptoms.

When your next blood test (fasting although you can drink water) is due, about every 6 to 8 weeks, get the very earliest test and also allow about 24 hours between your last dose of levo and the test and take levo afterwards. Food interferes with the uptake so leave about 1 hour before eating. It has been found that this method enables the TSH to be at its highest (it reduces naturally throughout the day) and many doctors treat us according to the TSH and ignore any other results, T4 is quite usual but T3 is unusual and I find that strange as T3 is the active hormone. To know if we have sufficient in our blood a Free T3 informs us if it is. Read about FT3 in this link:-

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

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

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

We are usually deficient in B12 and Vit D (both are pro-hormones) iron, ferritin and folate so the GP should test these. We need all of these to be optimum and (maybe GP doesn't know this) it is recommended that the B12 is around 1,000 and most top ranges are still around 600. You can supplement if necessary with B12/Vit D.

Don't be afraid of gaining weight. If you reach the optimum levo you wont and you can see about adding some T3 later on (liothyronine) but the GP wont at present.

Scconnor87 profile image
Scconnor87 in reply to shaws

Thank you for your message :) I really appreciate it!!

I do not want to put on weight... Sadly the women on my mums side have all had medical issues which have made them big.

It is one of my fears and worst nightmares as I can see the damage it can do to ones body.

I know it may sound silly to most but honestly its been my worst nightmare since I was an early teenager when my mother was diagnosed with type 2 diabetes.

She does not need anything anymore thank god but still the damage had already been done.

She is a size 22... I know healthy eating plays apart so I understand she could of looked after herself a bit more.

Thats why I am so anxious in taking such a medication and want to see if supplements will help to!!

shaws profile image
shawsAdministrator in reply to Scconnor87

I'll give you a link I posted recently. The problem is when you're not given sufficient and doctors keep you at the top of the range instead of 1 or lower. I also think some T3 added is a bonus but I doubt they will prescribe now its so expensive but you can source your own. Wait first to see how you get on with levo as millions in the UK take it.

healthunlocked.com/thyroidu...

Scconnor87 profile image
Scconnor87 in reply to shaws

God its so scary what a tablet that's meant to assist you in making you feel so much better can make you gain weight or have other issues?

Well done to all on the thread, they all look great!!

Can I buy T3? I would rather have a natural based med than Thyroxine... I have done nothing but read bad things about it.

shaws profile image
shawsAdministrator in reply to Scconnor87

I've met people who've been on levo for years and they are in great spirits and one was quite elderly.

T3 can be bought but it is a lifetime we have to take thyroid hormones.

I would give levo a chance and after you've increased to what is optimum for you you can add T3 as that works for many and raises metabolism and reduces weight (you might not have put any on). Hopefully if your GP sees you are much better he may prescribe for you.

Don't jump to conclusions and see how things level out.

Scconnor87 profile image
Scconnor87 in reply to shaws

I suppose that's the fear... Taking something and not knowing if it going to do anything, or shall I see be good for me!

Can people take T3 alone? no longer needing Thyroxine?

Scconnor87 profile image
Scconnor87 in reply to shaws

Can i get the natural desiccated thyroid myself? or does a doctor have to prescribe this? x

shaws profile image
shawsAdministrator in reply to Scconnor87

No - doctors wont prescribe as the BTA have made False Statements about it, especially as it has been in used successfully since 1892! They want full control over what we take no matter that it makes some people very unwell.You can source NDT yourself but some have tried it and didn't get on with it. It is all trial and error as we are dealing with hormones.

Scconnor87 profile image
Scconnor87 in reply to shaws

I hear you... It is so wrong the BTA have done that when it is so beneficial to so many!

In time if I was to source the NDT myself, does that mean I would no longer be needing Thyroxine and to also supplement with vitamins?

shaws profile image
shawsAdministrator in reply to Scconnor87

NDT would replace Thyroxine altogether and it is made from pigs or cows thyroid gland and contains all of the hormones, T4, T3, T1 and calcitonin (although in smaller amounts). If you need vitamin supplements you can still take them if needed.

annie-7 profile image
annie-7 in reply to Scconnor87

Has your GP tested levels of Ferritin, B12 and Vitamin D?

Good levels of these are needed to convert Thyroxine into the T3 that our bodies need. I would get these tested if you can before supplementing with vitamins.

Maybe just start the Thyroxine and see how you feel. Then introduce supplements one at a time (if you're deficient).

Scconnor87 profile image
Scconnor87 in reply to annie-7

Annie-7... She said she has and they are all normal!

But that's the thing, I do not see how they are if I am like this? sluggish, losing hair feeling depressed worried and anxious all of the time.

I have read on so many threads the UK Docs wont go the extra mile when it comes to Thyroid and so many have been told the levels are normal when in fact they are not.

Scconnor87 profile image
Scconnor87 in reply to annie-7

Annie, sorry to be a pain and message again... These two tests above are they the same? x

annie-7 profile image
annie-7 in reply to Scconnor87

No problem. The tests are similar, but the Blue Horizon test includes Vitamin D. If you use the code TUK10 when purchasing you can get £10 off the quoted price.

jimh111 profile image
jimh111

Just a quickie, levothyroxine helps you stop putting on weight.

SlowDragon profile image
SlowDragonAdministrator in reply to jimh111

Sadly not true for many of us 😟

Scconnor87 profile image
Scconnor87

Doctor just called I have autoimmune thyroid disease

Doctor wants me to start on the lowest dose of Thyroxine and see how I go... Anysupplement advice or warnings will be most helpful!

Scconnor87 profile image
Scconnor87

So what do I do? Eljii I am honestly so bummed by all of this.

Last September my Thyroid was fine, now due to stress etc its now cause for concern!

Is it not wise for doctor to treat with supplements first in the hope It will help?

I am so scared that the thyroxine will make me get really fat!! I am very small, 5ft 2 and only weight 7 stone.

Scconnor87 profile image
Scconnor87

So Thyroxine can't make people fat?

I do not know what to do! If there is not such a thing as a good dose, what can I do and take to help improve my hair from falling out, excess sweating, my skin breaking out?

Sorry for all of the dumb questiongs!!

Scconnor87 profile image
Scconnor87 in reply to Scconnor87

Questions.

Scconnor87 profile image
Scconnor87

This is what I am most concerned about... they literally give the lowest dose and then after time and more blood tests they just keep up'ing dose until they see and hear from patient an improvement?

SlowDragon profile image
SlowDragonAdministrator

If you improve your nutrients then uptake of thyroid hormones should improve. This may result in higher TSH (and higher dose of replacement thyroxine required) or your own body may respond by making more

Scconnor87 profile image
Scconnor87 in reply to SlowDragon

I am going to sound very blonde here.... So when you say nutrients you mean diet alone? I eat fairly healthy! I always think about what I eat if I am honest, eat veg everyday if I can etc.

I asked the doctor if I can take natural desiccated thyroid medication and apparently Thyroxine is the best thing out there :(

SlowDragon profile image
SlowDragonAdministrator in reply to Scconnor87

No - diet alone probably not enough.

Autoimmune thyroid (Hashimoto's) often has leaky gut / poor nutrient absorption aspect - so common for us to be low in certain nutrients

See my earlier reply above - basically If they have not been done ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

If you can not get GP to do these tests, then like many of us, you can get them done privately

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

Blue Horizon - Thyroid plus eleven tests all these.

This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

As you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

When you take your Levo it should always be taken on empty stomach and no food or drink for at least hour after.

Many of us take on waking, (no tea or coffee for an hour after) but some of us prefer bedtime, either as more convenient or perhaps more effective. (No food two hours before) No other medications to be taken at same time, especially iron, vit D, calcium or magnesium, these must be at least 4 hours away

Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this.

You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's.

Scconnor87 profile image
Scconnor87 in reply to SlowDragon

Thank you very much... I am going to look at those home tests!!

If they come back and they are not normal what do i do then?

Take the thyroxine still and use vitamins? or go back to my doctor?

What are good levels? I brush my hair and it comes out in clumps, I sweat, my face is like an oil pit :)

Scconnor87 profile image
Scconnor87

I am going to see if I can do a few home tests to gather more insight myself... x

Scconnor87 profile image
Scconnor87

I know I am doing everyone's heads in :( I am sorry!! Bare with this dumb blonde :)

So if i was to start thyroxine and take the vitamins

The B Vitamins - B1 Thiamine, B2 Riboflavin, B3 Niacin, B6 Pyridoxine, B12

Vitamin C

Vitamin D

Vitamin E

Magnesium

Selenium

Zinc

Flaxseed Oil Supplement

Will they help? Will i be bouncing off of the walls? Will I be doing more damage then good?

Treepie profile image
Treepie in reply to Scconnor87

Having been diagnosed you absolutely need thyroxine to live .

Proper supplements help but you need to know which are deficient.

Try to get a book on the subject .I found Thyroid for Dummies in the library .It is a very good explanation of thyroid issues.

SlowDragon profile image
SlowDragonAdministrator

Get tested - put a new post up on here with results.(including ranges)

Members will advise on what needs improving and how.

If results are very low (below range) then GP may consider. But if low but "in range" even if right at bottom they are very unlikely to consider it a problem. They don't treat nutrition issues.

SlowDragon profile image
SlowDragonAdministrator

Don't take any supplements (or multivitamins) at all until been tested - otherwise test is useless

Multivitamins are pretty useless anyway, best avoided.

silverfox7 profile image
silverfox7

I appreciate you have a first for knowledge but treatment is very often one step at a time. It's difficult to second guess what might be the next step as we can all react differently. Read everything you can and by all means ask questions but I feel you must start on the low dose of thyroxine and retest after 6 weeks. Always ask for a printout of your results and the ranges, ranges important as they differ from lab to lab, and then post for further comments. It is much easier for us to comment when we know where you are and how you have reacted to treatment. It's a slow journey as anything is in the thyroid world but hopefully you will feel a little improved at each tested. In the mean time study the Thyroid Uk info on their site. It is easier to understand as you watch your own progress and if you keep us up to date what the test results are we can help you along the way. Yes you will have heard things about Levo not working etc but people on forums usually have problems and want advice. The many who are fine don't join forems! Also many who have had help here and are much better stick around to give something back so to help others. None of us at present know where your journey will take you but don't worry you won't be on your own.

Scconnor87 profile image
Scconnor87 in reply to silverfox7

Thankyou so much Silverfox!! Really appreciate that 😘 Xxx

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