Newbie!

[Sorana1122]

Hi all,

I was diagnosed hypothyroid in 2011 and again in 2013 but there was doubt concerning the diagnosis up until December 2017 because of confusing clinical symptoms - low weight, sweating, tremor, no puffy eyes. I have never had hyper bloods, endocrinologist and doctor have suspected Graves' disease.

So since December 2017 I have been taking 25mcg Levothyroxine, I have had it upped to 50mcg in February 2018 and I had thyroid rechecked in April 2018. I do not know what my results currently are.

Since having the dose increase my hypothyroid symptoms have been increasing - constipation I have had since 2011, feeling cold, periods which have been heavy since 2001, pins and needles, dry skin (I had eczema when I was a little girl), losing hair, tiredness, dizziness, ears ringing, cold hands and feet, depression, memory loss, low stamina and concentration, joint aches and pains and my eyes have now begun to get puffy and my weight is now climbing up even though my eating pattern hasn't really changed.

Is it normal for me to expect an increase in possible hypothyroid symptoms after an increase in dose or is my body just getting used to the added thyroid hormones?

Thank you!

Dec 2011

TSH 5.2 (0.2 - 4.2)

FREE T4 15.8 (12 - 22)

June 2013

TSH 28.9 (0.2 - 4.2)

FREE T4 10.6 (12 - 22)

FREE T3 2.9 (3.1 - 6.8)

Dec 2017

TSH 5.66 (0.2 - 4.2)

FREE T4 14.3 (12 - 22)

FREE T3 3.2 (3.1 - 6.8)

[Nanaedake]

Some of your symptoms sound like they could be related to other deficiencies which is very common in people with thyroid disease. Have you had vitamin B12, vit D, folate, ferritin tested? If so, please do post results. It sounds like you should get your thyroid tested again since you have these symptoms but I would ask the doctor to also test these other nutrient levels at the same time. If you have never been tested for thyroid antibodies I would get these done at the same time. NHS will probably only do TPO (Thyroid Peroxidase antibodies) but there is also TgAb or thyroglobulin antibodies. If either are raised it shows you have autoimmune thyroid disease.

Give your doctor a list of symptoms as you've outlined above as he/she will need a valid reason to authorise vitamins tests if you reside in the UK.

Joint and muscle pain can be a symptom of low vitamin D. Heavy periods can be a symptom of low iron levels. Ringing in ears, or tinnitus is one of the symptoms of vitamin B12 deficiency so it's something you need to rule out.

It's possible that you have a coexisting condition that is preventing effective absorption of levothyroxine so if you optimise your levothyroxine and still feel unwell ask the GP to explore further.

Many people with hypothyroidism find their gut is affected and there is good advice on this forum about going gluten free to improve gut function. This will help absorption of vitamins and minerals from food.

[Sorana1122 in reply to Nanaedake]

Thanks for reply, thyroid antibodies have been

Jan 2013

TPO ANTIBODY 84 (<34)

Aug 2014

TPO ANTIBODY 148 (<34)

May 2017

TPO ANTIBODY 305 (<34)

TG ANTIBODY 276 (<115)

[Nanaedake in reply to Sorana1122]

Ok, so you've got autoimmune thyroid disease otherwise known as Hashimotos and will likely benefit from going gluten free. Read up about Hshimotos thyroiditis on the Thyroid UK website which is NHS Choices recommended website for Thyroid conditions. Once you've got results for the other vitamin levels then post here for good advice. Drs will often say all is ok, or even ignore under range levels but we will likely not feel well if we are bumping along the bottom of NHS ranges. Perhaps this is worse when you also have thyroid disease.

[Sorana1122 in reply to Nanaedake]

Bloods were done when I was taking 25mcg Levo, have had bloods when on no Levo at all with a TSH of 6.1, 6.8 etc.

[Sorana1122 in reply to Nanaedake]

Also, I had my TSH in June 2013 at its highest as 28.9? (0.2 - 4.2) Free T4 10.6 (12 - 22) and Free T3 2.9 (3.1 - 6.8)

Shouldn't I have been treated by then?

[Nanaedake in reply to Sorana1122]

Yes, even in the UK, treatment is commenced when TSH is higher than 10.0 Poor you, you must have felt terrible. Why didn't GP treat you then?

[Sorana1122 in reply to Nanaedake]

There was doubt surrounding the diagnosis. The doctor thought there was an error with my bloods - against the TSH and Free T4 results there were comments saying "unknown"

At the time I was sweating a lot, losing a lot of weight. It seemed I had the opposite problem - Graves

[Nanaedake in reply to Sorana1122]

People can lose or gain weight with hypothyrodism. It's more usual to gain weight but with coexisting nutritional deficiencies you can also lose weight as other people on this forum have described.

[BES59 in reply to Nanaedake]

Hashimotos can put you in and out of hypo & hyper. So your blood demonstrates hypo, but your symptoms demonstrate hyper. Have they tried treating you did hyper, bc weight loss would not be hypo. So ghee should treat you did hyper. My cat had hyper & drugs didn’t agree, so I had her get radioactive iodine treatment & she went normal thereafter. Never had any more problems. Environmental fungal illness initially caused.

[Sorana1122 in reply to BES59]

Never had hyper bloods

[helbell in reply to Sorana1122]

Hi Sorana, I lost weight and had those symptoms before my bloods showed overt hypothyroid. But nor were they showing hyper. It snot uncommon to be in and out of hypo and hyper...and made me feel like hell. Eventually I suddenly whacked on weight, lost body hair, became depressed, pain all the time, no exercise tolerance, etc etc etc...

You need to know what your levels are now as a matter of urgency. My bet is that you are overtly hypothyroid.

[Sorana1122 in reply to helbell]

I only have December 2017 results. April 2018 ones I don't know

Dec 2017

TSH 5.66 (0.2 - 4.2)

FREE T4 14.3 (12 - 22)

FREE T3 3.2 (3.1 - 6.8)

[helbell in reply to Sorana1122]

I can only suggest you get a printout - It's always a struggle at my practice but they will, reluctantly.

[Sorana1122 in reply to Nanaedake]

I also have had vitamins and minerals tested,

Dec 2017

FERRITIN 15 (30 - 400)

FOLATE 3.8 (4.6 - 18.7)

VITAMIN B12 202 (190 - 900)

VITAMIN D 30.1

<25 SEVERE DEFICIENCY

25 - 50 DEFICIENCY

50 - 75 SUBOPTIMAL

>75 ADEQUATE)

[Nanaedake in reply to Sorana1122]

What supplements have you been prescribed and what further investigations has your GP suggested?

Are you in the UK? If so there are guidelines your GP should follow and as your vitamin D is only just .1 within the range for treating with loading doses of vitamin D, I think you could ask your GP to begin with loading doses to raise your vitamin D levels quickly. After loading doses of vitamin D you should then be prescribed an adequate maintenance dose. You need to aim for a level around 100nmol or mid-lab-range. Ask your GP for the correct treatment according to the NICE guidelines or local CCG guidelines. Local CCG guidelines will be similar to NICE.

cks.nice.org.uk/vitamin-d-d...

The vitamin D Council gives some advice about levels to supplement if your GP cannot prescribe sufficient amounts of vitamin D3. 800iu is not enough to raise levels quickly.

You may wish to take magnesium and K2-MK7 with vitamin D3 in order to absorb the vitamin D effectively. Magnesium citrate is ok but there are other choices for magnesium.

naturalnews.com/046401_magn...

Have you got symptoms of B12 deficiency because if so, I advise you to post your B12 and folate results along with an outline of your thyroid condition and symptoms, low ferritin etc on the HealthUnlocked Pernicious Anaemia forum healthunlocked.com/pasoc and ask their advice about what your GP should be doing. Really, it looks like you need further investigations to rule out pernicious anaemia. Your GP should check for intrinsic factor antibodies.

B12 symptoms of deficiency

b12deficiency.info/signs-an...

B12 The Guidelines Doctors follow

onlinelibrary.wiley.com/doi...

onlinelibrary.wiley.com/doi...

Ferritin needs to be at least 70 or mid-range for thyroid hormone to function properly. Have you had a full iron panel because if not, your GP needs to do one.

Iron deficiency anaemia NICE guidelines

cks.nice.org.uk/anaemia-iro...

The importance of vitamins and thyroid function

americannutritionassociatio...

[Sorana1122 in reply to Nanaedake]

I take 800iu D3 since 2013 and ferrous fumarate (3 tablets) since 2012, I am in UK

Will go to other forum now

[Treepie in reply to Sorana1122]

Look up seaside susies posts on optimum vitamin supplementation.

[BES59 in reply to Sorana1122]

I began taking 5000 iu & then up to 8000. Very good. Can take up to 10,000 in own. I get drops along with D in my multi, calcium, & emergen c plus twice a day. Total between all 8000 felt good, so stopped there. You may need to take methyl b6, folate, & b12 vitamins, but at least get a methyl b12 spray for under tongue. Start with 1000 mcg up to 4-5000 mcg.

[Nanaedake in reply to Sorana1122]

Great, they should give you good advice on B vitamins.

[Angel_of_the_North in reply to Sorana1122]

800iu vitamin D won't EVER raise your level. it is a maintenance dose for someone with a good level. You need to get y0ur GP to tell you why your ferritin is still awful after 6 years of supplementation and refer you to gastroenterology or haematology to see why you are not absorbing the ferrous fumarate.

[SilverAvocado in reply to Sorana1122]

These are really terrible levels. You should have had much more treatment These are probably the reason your symptoms have looked unusual to your doctors.

Vitamin deficiencies are very common when hypothyroid, and you've been untreated for a shamefully long time.

The rule of thumb for each of these is that they should be halfway up the ranges, some of them higher, and they can give you serious symptoms if they aren't. Yours are all very low!

You need to take action right now on these, find Seaside Susie's posts. For some you will need further testing, and others you can start supplementing immediately. Get these retested in 6 months or so to confirm levels are improving, and if they aren't step up the supplements.

[Heloise]

Hi Sorana, Nanaedake has given you good suggestions. It's a shame that doctors didn't realize you were developing an autoimmune condition back in 2011 and you could have taken some steps. Now it's a matter of stopping the attacks against your thyroid gland. You had ups and downs previously due to those attacks. And this is the reason doctors don't care to pursue it since most of the treatment has to do with nutrition and herbals. You'll learn about the microbiome which controls a lot of your health issues. Your gut actually sends a lot of messages to your brain and if they aren't good your brain will react. Your deficiencies are already telling the brain you don't have enough B12. I know it's a lot to comprehend and we know only the naturopaths and functional doctors actually understand how to guide patients through this. This man has some wonderful videos on you tube on almost every health topic.

youtube.com/watch?v=UqSfZGc...(Not working as expected?)

[Sorana1122 in reply to Heloise]

Thanks. My endocrinologist who I am seeing for polycystic ovary syndrome and adrenal problems and my doctors thought I had Graves and that was why no treatment was started

[Ari3 in reply to Sorana1122]

Could you pls pm me your endocrinologist details if u don’t mine if he is private ? could you possibly have adrenal issues that’s why ur body can’t “take” much of any for of thyroxine ? this is exactly what happened to me and now iam treating my adrenals.I have started everything from 0 after 8 months of hell.

[Sorana1122 in reply to Ari3]

He is NHS, I don't really get on with him though, I am looking to change

[BES59 in reply to Sorana1122]

I will tell you I have insufficient adrenals also. As I discussed above, environmental fungal Cjcvidioidomycosis is responsible. What gives endocrine issues through supposed Diabetes, bug really fungal in dirt! If dry & dusty wind can put in air & on everything! My state is endemic. Look up ValleyFever survivors.com.

[BES59 in reply to BES59]

That is Coccidioidomycosis!

[Nanaedake in reply to Sorana1122]

If you have a problem with adrenal glands then you will read in the Levothyroxine patient information leaflet that Levothyroxine should not commenced until adrenal insufficiency is treated. Is this the reason for the delay in your thyroid treatment? We need all the information to offer good suggestions. Have you got a diagnosis of Addisons confirmed through tests? Addisons is a serious condition that needs prompt treatment but you say you are under an endocrinologist so I presume this is being addressed? You say you also have PCOS which adds other factors into your health profile. As for Graves disease. It is confirmed by testing for specific antibodies, TRAB and TSI, I believe.

[Sorana1122 in reply to Nanaedake]

Yes that is the reason for the delay in thyroid treatment. I had a diagnosis of Addisons through below range DHEA. PCOS not treated and neither is the Addisons

[Nanaedake in reply to Sorana1122]

NHS choices has good info on tests for Addisons if you are unsure of diagnosis. You could check those tests have been done and ask why Addisons has been untreated as you sound confused.

[Angel_of_the_North in reply to Sorana1122]

You so obviously don't have Graves that I wouldn't trust that endo as far as I could throw him. It is quite easy to tell if you have Graves; you test for TRab and TSI antibodies. You don't have high TSH and low free T4 with Graves, and PCOS is a fellow traveller of Hashimotos (aka autoimmune thyroid disease).

[Heloise in reply to Sorana1122]

Yes, hypothyroid and/Hashimoto's will force your adrenal gland to support life when your metabolism goes down but all of your side issues follow. Some will have depression, some will have muscle problems and digestive problems which then lead to more issues. That's why you have to start some sort of treatment at the beginning before you need to take a long road back. Here is a short view of what goes wrong.

youtube.com/watch?v=nZ_CP7l...(Not working as expected?)

[BES59]

Sounds like you should be trying the brand Synthroid & a larger dose according to your levels. Request a rT3, reverse T3. If it’s high it’s over riding your regular T3 & means your Euthyroid sick, but only usually if your levels are normal & they aren’t. If levels so high means you need a larger dose. Can you find a different doctor? Levothyroxine for me seemed to become degraded in quality, which I read generics can fluctuate a lot, so request the brand Synthroid or Naturethroid, which is T4 & T3 product. However, it seemed to make me sicker with elevated TPO instigating Hashimotos symptoms. More expensive if have compounding pharmacy create specific product for you. Otherwise, if none of that works ask to be treated with fungal medicine. It’s really what causes endocrine issues & Diabetes that doctors say ravages endocrine system. Also, another stage, have hormones chkd. Regulate your brain etc. so if low bioidentical hormones. Can take DHEA on own 10-25 mcg. Helped me. But first bc levels so high start with request Synthroid & higher dose!

[Sorana1122 in reply to BES59]

Diabetes ruled out, I just have Addisons and polycystic ovary syndrome

[BES59 in reply to Sorana1122]

It causes Addison’s also, all endocrine issues! I read about the other condition. I believe remember indications also caused by fungal. It turns into parasite down below in human intestine. Otherwise research online in your own. Had been very helpful for me in US bc doctors lie like crazy.