Thyroid self-medication: I've been feeling tired... - Thyroid UK

Thyroid UK

136,963 members160,560 posts

Thyroid self-medication

RobinPaulWilliams profile image

I've been feeling tired for a year now and the cold was unbearable right through the Winter. I bought a few thermometers, but thought they didn't work because the readings were always low. After having a blood test my triglycerides and cholesterol were found to be high. The doctor prescribed me statins and told me to avoid eggs etc - I have ignored all of that advice! TSH = 3.25 ng/ml, FT4 = 0.98ng/dl, FT3 =2.63pg/dl were within 'parameters', so he insisted that my thyroid is fine. He does not believe that low body temperature is significant and told me to find another doctor if I wasn't happy - I haven't yet, as I've preferred to inform myself first.

After a month of super healthy living, I'm still feeling weary, but, my TSH is down to 1.91ng/dl (For an unknown reason the first Endochrinologist did not test for FT4 or FT3). The second Endochrinologist told me that TSH was the only test that mattered... . I'm curious as to what has happened to my body in this last month, but am lacking full data.

I have decided to self-medicate with a dessicated thyroid. It seems impossible to get Armour, Nature or Westthroid sent to me in Italy, as I need a doctor's prescription. I have settled for Gold Thyroid 'food supplement. I intend to start on 130mg/day in the morning and afternoon /2 hour before eating. I will measure my daily basal temperature and have bought a Fitness Tracker to monitor heart rate and blood pressure. I will keep a log.

I trust that the triglycerides and cholesterol are rebalancing already

and will find their own equilibrium once I am heathy again and full of

beans...

I would appreciate any observations the community may have on my strategy and any healthy advice... Thanks

Written by
RobinPaulWilliams profile image
RobinPaulWilliams
To view profiles and participate in discussions please or .
Read more about...
50 Replies
greygoose profile image
greygoose

Did you get your antibodies tested? If you have Hashi's, that could account for the difference in the TSH. I really don't think 'healthy living' would reduce it - if only it were that easy! Also, were the two tests done at the same time of day? TSH is highest early in the morning, and drops throughout the day. It also drops after eating, so a fasting test is recommended.

Getting your nutrients tested wouldn't be a bad idea, either : vit D, vit B12, folate, ferritin. These all need to be optimal for your body to be able to use the hormone you're giving it - especially if that hormone is in the form of NDT. However, hypos often have low stomach acid, which makes digestion and the absorption of nutrients, difficult.

RobinPaulWilliams profile image
RobinPaulWilliams in reply to greygoose

Hi Greygoose and Soppysokes

Thanks very much for your swift replies!

Both blood tests were before breakfast at about 8:30am

The second blood test (ordered by the Endo) include for antibodies:

Anti-Tg = 15U/ml. Anti-TPO = 28U/ml. Both these are within 'parameters', but I have read in Aviva Romm's book that if either is more than 4, then I should suspect Hashimoto's... I have had a thyroid scan and no inflammation or nodules detected. Maybe I could be "sub-clinical"Hashimoto's...

I have beentrying to avoid/ limiting wheat (but I live in Italy!) and when I have eaten small quantities, I've felt a bit funny the next day. Perhaps I should go for a food intolerance test? or is this a waste of money?

The second Endo is testing for Testosterone, Potassium, Sodium, Vitamin D3, Calcium and Epstein-Barr antibodies... Results not back yet...

greygoose profile image
greygoose in reply to RobinPaulWilliams

Antibodies fluctuate, so you can't rule out Hashi's on one negative test. But, if your scan showed no damage to the gland, perhaps you've managed to catch it early. In which case, it would be a very good idea to avoid all gluten - 100% - to prevent any damage being done. You also need to keep your TSH suppressed.

The tests you are having are good, but don't go far enough. You really do need to have your vit B12 and ferritin tested.

Try taking selenium to reduce antibodies.

RobinPaulWilliams profile image
RobinPaulWilliams in reply to greygoose

Thanks for your advice. Im not sure how to persuade the doctors to do a full range of tests. I am getting some, but am afraid that if I ask them for more, they might see me as a "hypercondriac"(my girlfriend is already saying this to me (very hurtful and unhelpful))

I huessI can take selenium without worrying about overdose..

greygoose profile image
greygoose in reply to RobinPaulWilliams

Most people do take selenium without testing, because most people are deficient in selenium, as soils are depleted. Same for magnesium.

You live in Italy, you said. I have no idea what Italian doctors are like! But, if they're anything like British doctors, they just love giving people labels, rather than do their job and find out what's wrong. But, I don't really think that asking for two tests for essential nutrients that you are more than likely short of, qualifies as being a hypochondriac. After all, they are testing for vit D, and you live in Italy! Take a chance, live dangerously, and ask. :D

Silver_Fairy profile image
Silver_Fairy in reply to greygoose

You might be surprised at how many Italians are deficient in Vit D! They tend to closet themselves away in the summer months as it is so hot, esp down here in the south. It has been high 30's all this month and last and it was 40 on Wednesday 😳

We spend a lot of time on the beach!

greygoose profile image
greygoose in reply to Silver_Fairy

I wouldn't be surprised at all. I totally understand. But, most doctors don't. Given the amount of sun, they could very well ignore the vit D, thinking it must be ok, but the fact that the OP's doctor tested for vit D, makes me think he's somewhat open-minded, and therefore, the OP shouldn't hesitate to ask for B12 ferritin testing.

Silver_Fairy profile image
Silver_Fairy in reply to greygoose

Sorry GG, thought you meant that as gp had tested for Vit d deficiency in a sunny country, that he didn't really know what he was doing 😏

RobinPaulWilliams profile image
RobinPaulWilliams in reply to Silver_Fairy

I also live in the South (Puglia) and I work at the beach, so getting plenty of rays, albeit mainly indirectly! On (naturism) holiday next week near Salerno, so will further increase my sun exposure to all parts! :-P

RobinPaulWilliams profile image
RobinPaulWilliams in reply to greygoose

I suggested possible B12 deficiency to the Endo, but he said that my B!2 was likely to be good from my test results for other things (I didn't ask him HOW he came to his conclusion though - always afraid to ask TOO many questions or make TOO many demands)

Cheryl25 profile image
Cheryl25 in reply to RobinPaulWilliams

Sounds like guten intolerant. Get tested!

soppysokes profile image
soppysokes

Hi Robin. I guess your super healthy lifestyle changes may have helped but readings do go up and down like that if we have antibodies that are attacking the thyroid. Have you had thyroid antibodies test done, do you know if you have the auto immune (hashimotos) thyroid problem. There are many people on here that are really knowledgeable re hashi's and I am sure you will get some good advice very soon. Hope things improve soon.

SlowDragon profile image
SlowDragonAdministrator

Personally I would want a full thyroid test TSH, FT3, FT4 and TT4 also both TPO & TG antibodies and vitamin D, folate, B12 and ferritin tested before starting any thyroid hormones

Also consider gluten, leaky gut and low stomach acid - especially if vitamin levels are low

I gather being gluten free is surprisingly easy in Italy

RobinPaulWilliams profile image
RobinPaulWilliams in reply to SlowDragon

Hi Slowdragon

I'm frustrated that none of my specialists has been consistent in testing. I am not able to compare (apart from those two TSH measurements). How would you recommend testing for Leaky Gut Syndrome? It is not at all easy to avoid gluten in Italy :-/

SlowDragon profile image
SlowDragonAdministrator in reply to RobinPaulWilliams

Well I know it's quite a change in thinking, but if gluten is the problem most of us adapt because the result is so positive

Couple of articles saying Italy is relatively easy for GF as coeliac is very well recognised

independent.co.uk/life-styl...

telegraph.co.uk/travel/dest...

deglutenous.com/blog/guide-...

RobinPaulWilliams profile image
RobinPaulWilliams in reply to SlowDragon

Thankyoy for the newspaper articles; Ill check them out. I am willing to remove gluten completely from my diet if need be. However, I'd like to know for sure whether I have an intolerance before taking this step. I have pretty much removed it over the last month, only eating dishes with whole-grain flour and only very occasionally. I am not feeling better. Is there any way of finding out my gluten tolerance other than complete avoidance?

SlowDragon profile image
SlowDragonAdministrator in reply to RobinPaulWilliams

Well you can have endoscopy- if you are coeliac it will probably pick that up (but not definitely)

Gluten intolerance - no test at moment

You have to try it and see. I never suspected I was gluten intolerant as no obvious symptoms- but I have Hashimotos so i now know it was almost inevitable - just wish I had tried it twenty years ago - but there was no support group then sharing info

Stupidly I just took medics result at the time as gospel that I didn't need to consider gluten as an issue.

Since learnt from gastroenterologist that 50% coeliac blood tests are wrong

RobinPaulWilliams profile image
RobinPaulWilliams in reply to SlowDragon

I agree that doctors can do more harm than good, as they sometimes just do not know, but don't want to lose face by admitting it. I try to keep an open mind with the ones I've seen so far, but find myself biting my lip a lot, as I suspect contra-argument would be futile in most cases!

JennD profile image
JennD in reply to RobinPaulWilliams

True! Docs only know as much as they bother to learn! Some are interested in researching further into things, some are already knowledgeable and others seem to feel they have all the knowledge they need! I want my doctors to be the ones that keep up with the latest medical research!

JennD profile image
JennD in reply to SlowDragon

Wow! I never realized that about coeliac blood tests! Mine have been negative, however, my blood allergy labs were on the high end of norm for wheat. Positive was above 34 I believe. Mine was 32. Also the same for eggs and peanuts. I recently went gluten free, possibly getting some gluten in foods I may not realize though. I have hashimotos and also have been chasing a mystery illness for 6 months now.

Silver_Fairy profile image
Silver_Fairy in reply to RobinPaulWilliams

I live in Italy and I'm gluten free 🙂 Whereabouts are you?

RobinPaulWilliams profile image
RobinPaulWilliams in reply to Silver_Fairy

I'm in Puglia. On holiday next week near Salerno...

Silver_Fairy profile image
Silver_Fairy in reply to RobinPaulWilliams

We live in Lecce, Puglia. If you need any support etc message me, we could meet you 'per un caffe' if you're not too far 🙂

RobinPaulWilliams profile image
RobinPaulWilliams in reply to Silver_Fairy

Great! I'd love a caffe (d'orzo) sometime... I live in Cassano, just in land from Bari and am working as a massage-therapist near Polignano-a-mare...

Silver_Fairy profile image
Silver_Fairy in reply to RobinPaulWilliams

Polignano is lovely, we stayed near Monopoli when we first arrived then house sat for two months just outside Ceglie Messapica.

I take it you speak Italian, so it's not a miscommunication thing with the specialist?

RobinPaulWilliams profile image
RobinPaulWilliams in reply to Silver_Fairy

Si. Dicano che parlo molto bene l'Italiano. The biggest hurdle in communication is that the specialists want to be seen as the experts whose evaluations shouldnt be questioned - I'm finding that most frustrating, but trying to be as humble as posssible, whilst partially arguing my case with them (until I sense the energy drop in the conversation) :-/

TeriG profile image
TeriG in reply to RobinPaulWilliams

Hi

I had an intolerance test done. Very good and comprehensive. Also listed my vitamin deficiences. A simple hair sample is required and thats all. Tests results arrived within days. It enabled me to seek out a nutritionist that has me on an elimination diet - no milk, dairy gluten etc. I feel its helped alot. Here's the link testyourintolerance.com/ good luck!

RobinPaulWilliams profile image
RobinPaulWilliams in reply to TeriG

Thanks Teri. Is a hair sample accurate enough?

RobinPaulWilliams profile image
RobinPaulWilliams in reply to TeriG

Id like to test for vitamins, minerals, foods and heavy metals. I'm a little concerned about the effectiveness of tests taken from hair-samples. Are they reliable? I drastically changed my lifestyle and habits 5 weeks ago; will the hair-sample show long-term deficits or recent ones? :-)

TeriG profile image
TeriG in reply to RobinPaulWilliams

It showed up alot for me. Apparantly it can last for up to 6 months in the hair. It raised the dairy and gluten red flag for me. It also told me what vitamins and minerals I was deficient in. Perhaps call them/email and ask directly.

shaws profile image
shawsAdministrator

Welcome to our forum,

I am assuming it is Thyro-gold you are taking? If it is it was developed specifically to be precription-free by Dr John Lowe who was one of Thyroiduk's Advisers before his early death. He hated the 'modern' method of diagnosing and treatment and especially levothyroxine.

I shall give you an archived link and other topics are at the top of the page :

web.archive.org/web/2010103...

web.archive.org/web/2010103...

web.archive.org/web/2010112...

Some links within may not work but there is good info.

Blood tests should be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between dose and test and take afterwards.

Re the TSH - Dr Lowe wrote an article about the Tyranny of the TSH because it left many undiagnosed, especially in the UK as we aren't diagnosed until TSH is 10.

You should also check B12, Vit D, iron, ferritin and folate - all should be optimal.

RobinPaulWilliams profile image
RobinPaulWilliams in reply to shaws

Thanks for your warm welcome to the community, Shaws, and for the links: I'm looking forward to openinf them...

Yes, it's thyroid-gold I've ordered (this morning). I'm a little nervous, as I havent had my order confirmed yet and have ni idea how long delivery is - hopefully soon, so that I can start self-medicating... Not sure how I'm going to get my doctor to retest me to monitor my progress... I was hoping I could rely on my body temperature and the 'feel-good-factor'...

shaws profile image
shawsAdministrator in reply to RobinPaulWilliams

Dr Lowe's widow, Tammy is running the Thyro-gold now since his demise and if you have any queries she will help.

Dr L used the approach all doctors did at one time. He only took a blood test for the initial appointment and thereafter it was all about how the patient 'felt' on particular dose(s).

web.archive.org/web/2010103...

I wish you well.

JS33 profile image
JS33

My advice would be to get a private t4 and t3 thyroid test with antibodies checked as well , medichecks .com are good . If you know what you're levels are to begin with , and if you have hashi's antibodies . you are in agood starting position .

A lot of us use NDT from Thailand , I use thyroid -s . I don't know much about thyro-gold but I doubt if it is as cost effective as thyroid -s or has the key hormones in stable quantities.

RobinPaulWilliams profile image
RobinPaulWilliams in reply to JS33

Thanks. Ill look into private tests here in Italy (I guess I can't send blood from Italy to the UK). Ive already ordered thyroid-gold thus time, but thanks for the tip about the Thai NDT. Could you pm me with any brands I should look out for?

Silver_Fairy profile image
Silver_Fairy

Are you seeing Italian docs/specialists? The Italian health service is one of the best, but their thyroid meds are quite restrictive for some reason.

RobinPaulWilliams profile image
RobinPaulWilliams in reply to Silver_Fairy

Yes, I'm using the Italian national health service. My experience of the specialists has not been satisfactory so far. I've resigned myself to the idea of treating myself, whilst making the most of the service for getting tests done! However, I'd be delighted if I could find a knowledgeable, pragmatic and up-to-date practitioner... I live in the South, in Puglia!

Silver_Fairy profile image
Silver_Fairy in reply to RobinPaulWilliams

I'm self medicating and getting tests done myself. Love the fact that you can just walk into a clinic (public and private) and get whatever tests done that you need.

I haven't seen a GP or specialist here but know the health service is good in general. Maybe you need to go to the north 😏

We are in Lecce, Puglia and as I said before if you need any support etc etc just pm me on here. No pressure 🙂

Zoto profile image
Zoto

Hi,

I am new to all this myself too and very much at the beginning of my Coeliac/hypothyroidism journey but I just wanted to advocate getting tested for Coeliac disease. After complaining of my constant fatigue etc to the doctor and assuming it was my thyroid he, fortunately, ran quite a lot of tests and it turned out my gluten antibodies were through the roof despite me never having any of the typical gastric symptoms. I am now gluten free and as my doctors are absolutely vehement my TSH of 4.5 is 'normal' I am also forced to start my own self-medicating journey with my first mission being to try and heal my stomach as much as I can through diet and supplements. As others have said, check your vitamin levels. My B12, ferritin, and Vitamin D are all at the bottom of the range despite me taking several supplements already so I am going to work on getting those higher too. Anyway, we are all different but I recommend testing for Coeliac as I never would have suspected it based on my 'silent' symptoms. I don't know about Italy but you can buy home blood test kits for £20 in the UK which detect the typical antibodies produced when exposed to gluten. Good luck!

RobinPaulWilliams profile image
RobinPaulWilliams in reply to Zoto

Thanks Zoto. I guesss that gluten antibody tests are only available privately. I've onlt got limited funds at the moment, and the number of theories and tests is a bit overwhelming. I so much wish I could identify THE problem and put my 100% efforts to treating/avoiding. Avoiding wheat is one thing, but avoiding gluten altogether would be a big step up... (if necessary I'll do it, but don't want to sacrifice unnecessarily)

your low body temperature indicates adrenal gland fatigue not thyroid issues although they can sometimes go hand in hand .. pm me if you would like info on adrenal gland support supplements

My latest blood tests are back. Here's a comprehensive breakdown of results so far:

7th June:

PSA = 0.62ng/ml (0-3)

FT3 = 2.63ng/ml (2.2-4.2)

FT4 = 0.98ng/ml (0.8-1.7)

TSH = 3.26mIU/L (0.3-4)

Ferritin = 70.7ngr/ml (20-340)

Some Leucocytes under microscope

Triglycerides = 325mg/dl (40-160)

Total Cholesterol = 241mg/dl (140-200)

Still not worked out the significance of:

Albumin = 5.09g/dl (4.30-5.10)

Alpha 1 = 0.22g/dl (0.10-0.20)

Alpha 2 = 0.86g/dl (0.50-0.80)

Beta = 0.93g/dl (0.60-0.90)

Gamma = 1.00g/dl (0.60-1.10)

8 July:

AntiTG = 15U/ml (<60)

AntiTPO = 28.0U/ml (<100)

TSH = 1.91miU/ml (0.3-3.75)

Glucose curve base = 95mg/dl (60-100)

...after 1 hour = 131.0mg/dl (<180)

...after 2 hours = 113.0mg/dl (<120)

Cortisol = 167.3ng/ml (100-250)

12 July:

Sodium = 146mmol/l (136-145)

Potassium = 4.30mmol/l (3.5.-5.10)

Calcium = 9.3mg/dl (8.5-10.1)

Testosterone = 3.22ng/ml (2.30-9.90)

Vitamin 25-OH-D3 = 32.9ng/ml (20-100)

Anti EBV:

EBNA IgG = 353U/ml (>20 immune)

VCA IgG = 729U/ml (>20 immune)

VCA IgM = Absent (<20 absent)

I have taken on board all advice from the community so far and am looking into which tests to perform next. As I said in my earlier reply, I only have two TSH results to compare - which are substantially different ((from 3.26 to 1.91 after 1 month of healthy living) but with little improvement in my fatigue). Further comments welcome! :-)

SlowDragon profile image
SlowDragonAdministrator in reply to RobinPaulWilliams

Vitamin D 32.9ng/ml is approx 80mnol/L (Uk measurement) .....so not bad....good excuse to mop up a bit more sunshine

No B12 or folate results?

Your thyroid antibodies are low which is good

RobinPaulWilliams profile image
RobinPaulWilliams in reply to SlowDragon

Thanks for your analysis, Slowdragon.

Haven't had the B12 or folate tests done yet, but my second Endo told me that B12 was unlikely due to my other test results... (Excuse my ignorance, but isn't folate something women use to increase fertility and protect against Downs?). I'll be sunning it up next week, so hope to stockpile some vitamin D! I'm looking into doing comprehensive vitamin, mineral, heavy-metals and food intolerance tests. I'm a little wary about their value. I've seen that there was a Watchdog programme that seemed to debunk them. Who is to be believed???

SlowDragon profile image
SlowDragonAdministrator in reply to RobinPaulWilliams

Men need folate too!

B12 decreases with age as does low stomach acid and very common to be missed or misdiagnosed as acid reflux/high stomach acid.

easy-immune-health.com/caus...

drmyhill.co.uk/wiki/Hypochl...

RobinPaulWilliams profile image
RobinPaulWilliams in reply to SlowDragon

Thanks, Ill get these tests done (one way or the other)... Do you have any experience of hair-sample tests for minerals, vitamins, foods and heavy metals?

Spareribs profile image
Spareribs in reply to RobinPaulWilliams

I was just going to point out the ng/ml to nmol/l difference - a converter here...

unitslab.com/node/84

and labtests on-line have good explanations of tests

labtestsonline.org.uk/under...

RobinPaulWilliams profile image
RobinPaulWilliams in reply to Spareribs

Thanks for that. There are a number of test results that I don't understand yet; but would like to! Also its handy to have conversion factors to decipher material from different parts of the world.

Milly7135 profile image
Milly7135

Check out Dr John Bergman on thyroid issues on YouTube. Also Dr Ray Peat.

humanbean profile image
humanbean

Ferritin = 70.7ngr/ml (20-340)

Your ferritin result is only 16% of the way through the reference range. If your serum iron and other iron-related blood results are quite low in range then you would probably feel better supplementing iron. If you search the forum for ferrous fumarate you'll find many posts on the subject of supplementing iron.

For optimal results for iron : rt3-adrenals.org/Iron_test_...

Some other useful iron links :

irondisorders.org/Websites/...

labtestsonline.org.uk/under...

Please note that people can be deficient in iron without being anaemic.

If someone is deficient or low in vitamin B12 and folate as well as iron, then disentangling what blood tests are telling you can be difficult. So it is always worth asking once you have gathered enough info together.

It is essential to be very careful with supplementing iron because it is poisonous in overdose. People can have odd results that might make the difference between safe and unsafe supplementing, so always ask for opinions. Things aren't always clear-cut.

You may also like...

SELF MEDICATING ON THYROID

SELF MEDICATE FOR HYPO- THYROID IN ENGLAND? Can you just read up on thyroid and choose a dose, then

Need help with self medication

month ago I decided to get my thyroid tests: TSH: 3.1 FT4: 7.7 FT3: 2.71 anti tpo and anti tg...

Help with self medicating Levo

normal tsh and ft4, low DHEA and 4 point cortisol. I've tried glandulars, both adrenal and thyroid...

Self medication with T3

story, I told my doctor I can't keep on like this and I will resort to buying online, and I was...

Self medicating hydrocortisone

TSH - 0.93 (0.23-5.6) ft4 - 12 (9-28) ft3 - 4.4 (3.1-6.8) acth - 19.8 (7.2-63.3) Testosterone...