Unexplained symptoms advice needed please

Hi I have just joined. I have Hashimoto's diagnosed in 2015. I was diagnosed hypothyroid in 2011 but didn't start taking Levo until 2014 and I started T3 8 months ago. My endo wants my TSH below 2 and nonsuppressed, my Free T4 in the upper third of its range and my Free T3 in the upper third of its range. At the moment neither are where the endo want them to be.

Hypothyroid diagnosis in 2011:

Serum TSH - 6.3 (0.2 - 4.2)

Serum Free T4 - 16.8 (12 - 22)

2nd hypothyroid diagnosis in 2014:

Serum TSH - 31.2 (0.2 - 4.2)

Serum Free T4 - 10.5 (12 - 22)

Hashimoto's diagnosis in 2015:

TPO antibodies - 49.5 (<34)

TG antibodies - 255.3 (<115)

Past 6 lots of results:

May 16 (100mcg Levo and 5mcg T3)

Serum TSH - 3.81 (0.2 - 4.2)

Serum Free T4 - 13.6 (12 - 22)

Serum Free T3 - 4.2 (3.1 - 6.8)

Mar 16 (75mcg Levo and 5mcg T3)

Serum TSH - 7.40 (0.2 - 4.2)

Serum Free T4 - 12.1 (12 - 22)

Serum Free T3 - 4.8 (3.1 - 6.8)

Jan 16 (50mcg Levo and 5mcg T3)

Serum TSH - 0.03 (0.2 - 4.2)

Serum Free T4 - 22.8 (12 - 22)

Serum Free T3 - 5.2 (3.1 - 6.8)

Nov 15 (75mcg Levo and 10mcg T3)

Serum TSH - <0.02 (0.2 - 4.2)

Serum Free T4 - 20.5 (12 - 22)

Serum Free T3 - 5.6 (3.1 - 6.8)

Sep 15 (75mcg Levo and 10mcg T3)

Serum TSH - <0.02 (0.2 - 4.2)

Serum Free T4 - 20.1 (12 - 22)

Serum Free T3 - 5.2 (3.1 - 6.8)

Jun 15 (175mcg Levo)

Serum TSH - 1.20 (0.2 - 4.2)

Serum Free T4 - 19.3 (12 - 22)

Serum Free T3 - 4.2 (3.1 - 6.8)

I have lots of symptoms which my endo says can't be explained, I am sure they are due to me being undertreated?

Heavy periods

Irregular periods

Hair loss

Dry skin

Constipation

Tiredness

Insomnia

Weight loss

Acne

Feeling cold

Loss of appetite

Weak muscles

Aches and pains

Difficulty swallowing

Acne

Muscle twitches

Dizziness

UTIs

23 Replies

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  • Has your endo or your GP tested you for:

    - Vitamin B12

    - Ferritin

    - Folate

    - Vitamin D?

    If so can you post the results and ranges.

    Some of your symptoms can be linked to having suboptimal amounts of vitamins and minerals. Optimal to us is different to what is optimal to doctors which is why we need the result and range.

  • Thank you Bluebug, I used to supplement in vitamin D and vitamin B12 but not anymore because my doctor has said my levels look good now. I started supplementing in January 2015.

    Ferritin which was low has been treated with an iron injection back at the start of April. My consultant in charge of the iron injections initially said there are no plans to arrange for another iron injection but he has sent a letter saying he needs to find out when or if further ones are needed. My levels have been checked yesterday and I won't know the results of them until next Friday. I take a proton pump inhibitor (Lansoprazole) which I have read will affect B12 levels and I have read the antibiotic Trimethoprim affects folate levels and I have felt worse since taking these so I am wondering if either or both of these have affected my levels?

    Apr 16

    Serum ferritin - 174 (15 - 150)

    Serum folate - 5.1 (4.6 - 18.7)

    Serum vitamin B12 - 496 (191 - 663)

    Feb 16

    Serum ferritin - 16 (15 - 150)

    Serum folate - 6.2 (4.6 - 18.7)

    Total OH vitamin D - 71.2 (>75)

    Oct 15

    Serum ferritin - 18 (15 - 150)

    Serum folate - 10.0 (4.6 - 18.7)

    Serum vitamin B12 - 674 (191 - 663)

    Jun 15

    Serum ferritin - 21 (15 - 150)

    Serum folate - 5.9 (4.6 - 18.7)

    Serum vitamin B12 - 382 (191 - 663)

    Total OH vitamin D - 58.6 (>75)

    Dec 14

    Serum ferritin - 19 (15 - 150)

    Serum folate - 5.3 (4.6 - 18.7)

    Serum vitamin B12 - 363 (191 - 663)

    Mar 14

    Serum ferritin - 15 (15 - 150)

    Serum folate - 4.8 (4.6 - 18.7)

    Serum vitamin B12 - 351 (191 - 663)

    Total OH vitamin D - 59.2 (>75)

    Nov 13

    Serum ferritin - 12 (15 - 150) - given iron tablets

    Serum folate - 4.3 (4.6 - 18.7)

    Serum vitamin B12 - 331 (191 - 663)

    Total OH vitamin D - 41.3 (>75) - given 800iu vitamin D3 tablets

  • Your vitamin D needs to be near 100nmol/L to be optimal.

    As you have been tested in the past two years on the NHS you will need to be tested privately as the NHS won't pay for another test unless your level was under 25nmol/L. City Assays is the cheapest - thyroiduk.org.uk/tuk/testin...

    I don't know why your doctor said you didn't need to supplement when your level was NOT well over 75nmol/L. You clearly have problems with your vitamin D levels as shown in your history so the advice given was unhelpful and could lead you back into worse insufficiency especially as it was given in February, which is a month no one in the Northern hemisphere can make vitamin D naturally through the sun. In addition anyone who is found to be insufficient when tested needs to supplement as a minimum from October to April though ideally all year round.

    Your vitamin B12 should be near 1000 to be optimal. Your current level is too low.

    Your folate should be around 10 but preferably higher to be optimal.

    On the scale your have given your ferritin level is fine. It is actually slightly higher than the range but I have seen ranges that go up to 200. It could indicate you have inflammation but without c-reactive protein test result or a history of white blood cell tests we cannot tell.

    If you know your medications are causing your problems with vitamin folate and B12 levels then I suggest you supplement.

    For B12 supplementation use methylcobalamin lozenges such as Jarrows or Solgar available from Amazon.

    For Folate a good vitamin B complex to balance the rest of your B vitamins out.

    You won't need your folate and vitamin B12 tested again until the doctor suggests. Just make sure you stop supplementing your B vitamins a minimum 2 days before the test. Preferably you should leave 5 days as doctors freak out if you have a vitamin B12 level of 1000. They don't realise that you will have high levels due to supplementing the days before.

  • ...and the B12 that is circulating in the blood due to supplementing will skew the result and be of little value. We need B12 in the cells where it is utilised. Only 20% of any blood test result for B12 is available to be transported to the cells .....

    Doctors know so little about vitamins and minerals so it is best to read and learn for yourself. When B12 is below 500 it can become a neurological condition.

    b12deficiency.info/signs-an...

    Everything you need to know about B12 - to keep you ahead of an unknowing GP :-)

  • Thanks Marz for this. :)

  • Thanks Bluebug for this. I was checked for C reactive protein, I think it was <10. White blood cell count was 6.6 (4.0 - 11.0)

    I will supplement the vitamin D, B12 and folate.

  • You need to keep an eye on your own white cell count as it can tell you (though you normally find out when you have it) whether you are going to get a cold or another infection.

    in regards to your c reactive protein (CRP) your level is actually high on the scale I have. it is possible that you have another autoimmune disease. At the moment this will be difficult to investigate as you have so many things going on.

    BTW if your doctors haven't done so they need to investigate why your ferritin levels keep falling so that you need injections.

  • Do you take PPIs for 'stomach acid'. Why I'm asking is that low stomach acid is common with hypo but symptoms are so similar that doctors prescribe antacids which is the opposite of which we need. I take Betaine with pepsin which provides me with stomach acid and I've had no pain since. I had worse pain when GP prescribed a generic PPI. There's a few topics on this link.

    google.gr/webhp?sourceid=ch...

  • Thanks Shaws for this. I take Lansoprazole for acid reflux.

  • I would advise to stay clear of PPi's they lower your stomach acid and make a clear path for H pylori ..which leads to stomach ulcers. (got the T shirt!). The recommended length of time to take PPi's is only 8 weeks!) My GP didn't know this. Long term anti -biotics for Rosacea didn't do me any favours either.. gut issues. I have ditched both and working on healing my gut health. Get yourself on Prebiotic Fos and Pro- biotics, Vitamin C, B Complex. Vitamin K2 mk7 if taking Vit D and or Calcium. Organic Cider Vinegar with the mother intact. Aloe Vera helps digestive issues also. x

  • Thank you Mango_555, my doctor has put me on a repeat prescription for Lansoprazole for 30mg. I don't think the doctor was aware of problems caused by taking proton pump inhibitors long term...I have possible acid reflux and I have damage to the upper part of my oesophagus.

    I have made notes on what you have recommended.

  • If you take the vinegar dilute it 1 tablespoon in half cup of water preferably not the c..p out the tap, drink it through a straw to save your tooth enamel. I wouldn't over do the vinegar in light of your damaged oesophagus. Probably best use all the other things first and try making your own organic bone broth, this as helped me quite a lot. I bought a large slow cooker from Argos £20. and make up a batch and freeze it. I add a couple of big spoonfuls to 2/3 rds cup of mineral water and boil it up. I wish you well x

  • Hypos often have LOW stomach acid which can have the similar symptoms to high acid - which is far more rare ! We need good levels of acid to break down proteins in the stomach - before their onward journey into the duodenum. If foods hang around in the stomach too long - they begin to ferment. This upward funnelling of the fermention can cause problems.

    PPI's are a multi-billion dollar industry for Big Pharma - sadly. In the old days we had natural remedies - like bi-carb in warm water - which is what my Nan used to take after eating home baked bread - cheese and pickled onions !!!

  • Welcome to our forum Sunflower123

    You certainly have lots of symptoms which are very unpleasant, to say the least. It's clear to me that all of your symptoms are hypothyroid. I am not medically qualified by the way. Just have hypothyroidism and, finally, well.

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

    They are too fixed on the TSH which is meaningless in trying to 'fit' a person into a range. The purpose of taking thyroid hormones is to give sufficient to alleviate all symptoms but am afraid they are unaware of how many symptoms there are and that we suffer.

    You have hashimotos which is an Autoimmune Thyroid Disease and at times your thyroid gland is under attack until you finally become hypothyroid.

    We have to read and learn and those who have hashi's will respond.

    hypothyroidmom.com/when-the...

    You can get well but it is gradual but there's light at the end of the tunnel for most of us.

  • As you have Hashimoto's (high antibodies) you might find, like many others that adopting 100% gluten free diet reduces symptoms and may lower antibodies over time.

    If you are considering trying gluten free, good idea to be tested for coeliacs first. Having Hashimoto's gives slightly higher chance than average population of being coeliac, but more of us seem to "just" suffer leaky gut, where gluten molecules can incorrectly cross into blood stream, causing raised antibodies. Gluten molecules and thyroid molecules are apparently very similar so body gets confused.

    Supplementing selenium apparently can also help lower antibodies.

    As Bluebug says very important to check levels of vitamin D, B12, folate and ferritin. These need to be at good (not just average) levels for thyroid hormones to work well. Often with Hashimoto's one or more will be low or even very low.

  • Thanks for this SlowDragon. I have been checked for coeliac but I didn't eat gluten for every meal and I was checked 2 weeks later. The doctor has said she didn't think I did the gluten challenge for long enough. The reasons I did the gluten challenge for such a short time was not only did I not know how long it would last but also because my digestive symptoms increased about 6 days in.

    The doctor didn't say how long I needed to do the gluten challenge for, do I need to do this for longer? How can I get gluten into every meal for it? I've been trying to include things in now and again like a sandwich but I have a feeling I need to do more than just this.

    I have had vitamin B12, vitamin D, folate and ferritin done a couple of months ago. I supplemented in vitamin D and vitamin B12 but not anymore because the doctor has said my levels look good enough now. Ferritin has been treated with an iron injection back in March. The doctor has since told me the effects of the iron injection should have worn off by now. I will post my results into the reply to Bluebug.

  • If your stomach symptoms were getting worse it would have been worth keeping a food diary to see if there were any triggers. As there are many foods that different people are intolerant to and they only often find out when they eliminate one type of food from their diet and replace them with another.

  • Hi sunflower,

    Do you know that if your b12 was low due to malabsorbtion, possibly because of low stomach acid, you need supplements of b12 for life? You can't store it for long and excess is just excreted so you can't overdose. Doctors don't realise this, like everything else about b12 and thyroid issues! Your doctor should not have stopped them. I used to take sublingual b12 lozenges by Jarrow and bought from Amazon. I self inject now. You can also buy oral and nasal sprays and patches.

  • I haven't done gluten challenge - don't intend to either. I feel so so much better off gluten, that all I need to know. I won't go back for 6 weeks of hell just for a test

    I am absolutely 100% gluten free, can't believe the fantastic improvement it has made. Pity no medic suggested it at all during the previous 23 years of hell.

    It was through reading posts on here that I realised I might have gluten issue. I had absolutely no gut symptoms. Many many Hashimoto's people seem to have gluten issues, probably due to leaky gut.

    I joined coeliac society, so then get access their huge directory of suitable GF foods. There is useful app for smart phone when out shopping. Saves reading all the small print on labels.

  • Well, I don't think your endo's wishes are ever going to come true! Because you're just not converting very well. Which means that you are going to need your FT4 over-range - which will probably suppress your TSH - in order to get your FT3 to the place he wants it. So, what you need is a little bit of T3 added to your levo. Which will absolutely suppress your TSH. How come he doesn't know that...? What sort of fairyland do these endos live in?

  • Exactly what I was going to say. You're undermedicated - and yes, you may be B12, Vit D and ferritin deficient too - but your biggest problem is your endo's insistence that your TSH mustn't be suppressed. I think it's quite simple - you need an increase in T3 - possibly to 20mcg rather than the paltry and fairly useless 5mcg you've been prescribed.

  • Ignore the stupidity of your endo

    Al your symptoms are due to hypothyroid end of

    Plus STOP the proton pump inhibitors end of

  • Well, it might be impossible to have your FT4 and Ft3 where is wants it without your TSH being suppressed. TSH is not really important when you are on meds. You don't look to be converting T4 to T3 very well. B12 needs to at least 1000, and ferrtin and folate in the middle of their ranges. You also need zinc and selenium (but try pumpkin seeds and brazil nuts if not allergic).

    Your Nov 2015 and Jan 2016 results look quite decent - did you feel better on either of those doses?

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