I'll cut to the chase because this is quite a complicated issue. But your help would be really appreciated.
I have Hashimoto's thyroiditis but my symptoms won't abate even when I'm in normal range.
I am beginning to suspect I have another autoimmune disease for a number of reasons which I'll get into but I just don't know where to start figuring this one out. I was hoping to lend your expertise on this one.
Now what affects me today is essentially
- Burping (Sometimes supragastric sometimes real) as a result of functional dyspepsia.
- Breathlessness and difficulty breathing.
- Chest discomforts
- General feeling of being unwell
- Fatigue (usually)
- Dry throat and mouth
- Chronic inflammation of nasal aiways but no phlegm
So I wondered whether I needed more T4 (currently on 125mg of levothyroxine). I consulted with a doctor and she agreed to put me up to 150mg when my TSH was around 3.5. It made things far worse.
Weird feelings all over the body.
I passed out on a train when I hadn't eaten breakfast, it was packed full and I'd basically ran flat out to make it.
Found myself with vertigo today but dizziness and lightheadedness for about a week.
I began trembling.
So I guessed I went over into hyperthyroidism and now I'm lowering my medication.
So easy enough. But what comes through here is that the persistent symptoms that I've listed above may in fact be due to other factors, and I wonder, another autoimmune disease.
There is anxiety involved (but, I mean, why wouldn't there be?), despite a plethora of tests (ECG, 24-ECG, EKG, Ultrasounds, Endoscopies, 24-Endoscopy, Manometry, CT Scan of Thoracic Area, Chest and Abdomen, and lots of X-rays). I feel constantly like I'm on the verge of a heart attack because of the breathing difficulties.
I suffer chronically from a variety of symptoms, so many its difficult to remember them all. One day it is A another day it is B, but every day the symptoms listed above remain. What I do not have is any problems with my skin, joints (apart from sciatica/posture) and mobility.
Aside from this I have suffered from asthma as a child but a spirometry said my lung function was very good. My blood pressure is always fine, SP02 rate is usually fine (and I think when its not its because the Omron machine is a bit hit and miss). I have a vitamin D insufficiency which requires supplementation but I also have too much calcium in the blood (not due to hyperparathyroidism). I take selenium, vitamin d, fish oil and some Chinese herbal medicine.
I have had generic tests for autoimmune disease (blood sugars and cortisol levels) as well as a test for Carcinoid syndrome. I routinely come back clear. The only issues are:
High bad cholesterol
Low good cholesterol
High calcium count
High monocyte count.
I am passed the stage of needing my feelings protected. I've a lovely wife and amazing son who depend on me and every day I'm finding it hard to get by. I just want some answers so I can find a way to deal with the problem one way or another. I'm willing to press the issue with the doctors but I don't know where to look anymore. If the above persistent symptoms are not related to the thryoid then what else could they be? And what can I do about getting some clarity to this issue?
I'm not asking for answers (but if you got it then by all means!), I just need ideas.
Any help would be really appreciated.
If you have any questions, then please ask.
Thank you
Written by
DressingGown
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OK, so before anyone can make any suggestions, we need your latest blood test results, with ranges:
TSH
FT4
FT3
vit d
vit B12
folate
ferritin
From those we can tell if you have absorption or conversion problems.
A lot of your symptoms sound like nutritional deficiencies, and you already know you have vit D deficiency, but what about the others? Low ferritin can cause breathlessness, low B12 dizziness - and a whole host of other problems.
As for cholesterol, forget it. For a start, there's no such thing as good and bad cholesterol. Big Pharma invented that in order to scare people into taking statins. Do you take statins? If your cholesterol is high, it suggests your FT3 is low. There's an inverse relationship.
You're taking vit D, but are you also taking the co-factors? Magnesium and vit K2 - MK7. The vit K2 makes sure calcium goes into the bones and teeth, and doesn't build up in the soft tissues and blood. Taking vit d increases the absorption of calcium from food, so if you're not taking K2, that could be the problem. Taking vit D also reduces magnesium, so you need to keep that level up or it can cause all sorts of problems.
Beware of Chinese herbs. That's a very broad subject. Who is advising you on what to take? Some could be affecting your cortisol levels. Have you had your cortisol tested?
First thing is, do you have any actual blood test results? if not will need to get hold of copies.
You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Very important to see exactly what has been tested and equally important what hasn't been tested yet
125mcg Levothyroxine is not a high dose, especially being male
You will need FULL Thyroid testing 6-8 weeks after your dose increase to 150mcg
Meanwhile ask GP to test folate, ferritin, B12 and vitamin D and thyroid antibodies if not been done
Vitamin levels are all frequently too low when under treated on Levothyroxine, especially if you have autoimmune thyroid disease also called Hashimoto's diagnosed by high thyroid antibodies
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Other medication at least 2 hours away, some like iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients
How much vitamin D are you currently taking?
Has level been retested?
GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Just trying to figure out whats the right dose for Magnesium and vit K2 - MK7.
Will buy some as soon as I can.
As you know I'll be coming to the UK soon. I will do the Vitamin tests there. Wish there was a forum like this where I lived. Goodness me its a life saver.
I know I have you repeating things but I'm very, very grateful for your feedback.
Clean up your diet completely and your body will take care of itself.. Sorry to be so blunt.
I had a shopping bag full of meds, steroids, pain killers, acid blockers, anxiety meds, migraine meds.. This supplement, that supplement, I had at least 40 different supplements in a drawer & I would just choose a random combination to try each week because I wasn't feeling any better...
I'd had enough, I could see where it was going & that i'd just end up needing more & more meds for more & more issues as time went on because the meds are taxing to the system & place you liver & kidneys, adrenals under constant stress as they have to remove what is essentially poison from the body.
I started eating a plant based diet & ditched all my meds & supplements (apart from B12 & D3) & I have my life back, I am completely recovered.
Do you rigidly stick to your diet or do you have the odd indulgence? Assuming you were diagnosed with Hashimoto's, that is incredible. Do you still take T4?
Hi DressingGown. I read your other posts. You've only mentioned TSH, and yours has been allowed to remain high. Thyroid medication is not dosed based on TSH. It's a pituitary hormone, not a thyroid hormone. Meds are dosed based on Free T3 and Free T4, in conjunction with TSH. Did your doctor mistakenly prescribe and increase/decrease your dosage based on your TSH, or did they utilize the correct labs, which are always used as a group: TSH, Free T3 and Free T4?
What are your general blood results: Comprehensive Metabolic Panel and Complete Blood Count?
None of your symptoms or TSH way up to 3.5 indicate hypothyroidism. I don't understand how it was concluded that you were hypothyroid. Can you please expand on that? Now you've lowered your meds. You'll feel worse if you aren't already.
Increasing or decreasing meds or adding T3 to T4 can never be properly done without the right labs; those three together.
Can you post your TSH, FT3 and FT4 exact numbers and the range? Your FT3 and FT4 should be at least 50% of range, if not a little higher. If your are below 50%, you will likely have symptoms. With a TSH of 3.5, plus your symptoms, I wouldn't be surprised if your FT3 and FT4 are towards the bottom. If these hormones are over 75%, this can also cause symptoms. Some people are fine with one or both hormones being that high or higher in range, but many are not.
Your TSH allowed to remain at 3.5 which means your thyroid is slow and your thyroid hormones FT3 and FT4 will be low. This will make you feel awful as you are experiencing, and cause all sorts of problems because it makes your metabolism too slow. Personally, I would die if my TSH was ever that high! When you have Hashi's, TSH should be suppressed down to under 1.0. (for me, 1.0 TSH would mean my FT3 and FT4 are too low, and I'd feel horrible!). Many Hashi's or even hypo people find that in order to get their thyroid hormones (T3 and T4) up to where they have the least amount of symptoms, their TSH must be suppressed, often to way below the lowest number in range.
If your thyroid hormones are not optimal, I would not jump to an assumption or inquiry that you have another autoimmune disease.
Dry mouth: This can be a symptom of diabetes. Insulin resistance and diabetes can accompany thyroid disease (slow metabolism). Have you been tested for diabetes?
Chest or heart issues: If your thyroid hormones are not optimal, but are too low or too high (with TSH 3.5, yours are low), then this can cause your heart to beat irregularly, which can cause heart discomfort.
Digestive issues: If your thyroid hormones are too low, making your metabolism too slow, your digestive issues would not surprise me. However, other things could be going on, such as candida, or many other issues. Have you had your gut microbiome tested? This is a stool test that will best for bacteria, fungi and parasites. If your gut microbiome is not balanced, you can have all sorts of symptoms. After years of stomach issues I finally got a stool test. One test came back positive, I was treated, and those symptoms are now a faded memory.
Fatigue: Fatigue is a symptom of hypothyroidism. If your thyroid hormones are not high enough but not too high, you will have fatigue. End of story.
Sinus problems and the asthma you mention in another post: This is only a job for an ENT _and_ an allergist/immunologist. Have you seen both of these doctors? The ENT will put a scope into your sinus and have a look around. If they don't see any abnormalities that could cause your symptoms, then they'll send you to an allergist/immunologist, which you need to see regardless. Your general doctor, ENT, or allergist/immunologist needs to swab your nose and test you for bacterial and fungal infections. If you have some infection going on, this can make your Hashimoto's worse. An allergist/immunologist will test you for various causes, including allergies. Allergies can cause the symptoms you are having. I never in a million years would have thought I had allergies. I thought my symptoms were from an old nose injury. No, not completely. I do have something partially blocking one airway, which I will be having surgery for, but that was not all of the story. I found out I have allergies and allergic rhinitis. I don't have asthma, but some allergens cause me breathing issues, so I occasionally use an inhaler.
Since you are thinking you might have another autoimmune disease, what other autoimmune markers or autoimmune antibodies have you had tested? There are many. So many of your symptoms sound like they could be caused by low thyroid hormones.
Doctors where I am view the TSH range as the Northern Star. All increases have been based on TSH.
I was diagnosed based on a TSH over 10 in 2017.
Blood is usually within range. The most detailed I will post here. Esinophils were low once and Monocytes were slightly raised once. Aside from that and Cholesterol, everything was normal.
I have been tested for Diabetes and I don't have it.
In fact, last September I had a test for autoimmune diseases. They said I had nothing but I don't know what was tested specifically. I'll post the results here at the end.
Stool test sounds like something I should do. Specifically what test did you have or what is it I should be looking for?
Chest/Heart are fine but I've had vertigo for about a month now - I think my meds were too high. Lowered them and all the symptoms have gone except the Vertigo which is actually quite alarming. Not sure what to do.
I went to an ENT about the sinus problems and he said he thinks its an infection. (I explained to him many times I have had these symptoms constantly for years.) On a course of antibiotics now, they won't work. Then I'll go back. Sinuses looked fine on inspection. I've had allergy tests, skin and blood, all fine. The ENT doctor mentioned acute rhinitis. But its probably non-allergic or chronic.
Thanks for your feedback. I really appreciate it.
Okay so here goes (results are abbreviated as per the document)
Autoimmune Tests
Blood
WBC 5.32 (3.10-9.80
RBC 5.37 (4.11-5.45)
HGB 15.8 (12.9-16.8)
HCT 47.1 (38.4-49.5)
MCV 87.7 (85.1-98.5)
MCH 29.4 (28.5-33.7)
MCHC 33.5 (32.8-35.9)
PLT 238 (157-342)
Neutrophil 53.0 (46-62%)
Lymphocyte 34.4 (30-40%)
Monocyte 10.9 (4-7%) High
Eosinophil 1.1 (3-5%) Low
LYMPH# 1.83 (0.4-3.7)
NEUT# 2.82 (1.1-8.8)
Blood Circulation
PT (sec) 11.9seconds
PT (act) 105% (70-120%)
PT (INR) 0.97 (0.8-1.2)
APTT 24.4 seconds (24-39)
D.D-dimer 0.3> (<1.0)
Autoimmune Test
IgA 203 (93-426)
IgG 982 (826-1840)
IgM 85(27-205)
Complement C3 116.2 (70.5-125.6)
Complement C4 23.8 (10.6-33.0)
CH50 Blood Component Value 45 (30-46)
Clinical Chemistry
AST/GOT 19 (12-30)
ALT/GPT 23 (10-42)
LDH 94 (124-226) Low
ALP 146 (115-359)
y-GTP 21 (9-54)
TP 7.2 (6.3-8.1)
ALB 4.6 (3.9-5.1)
Ch-E 413 (201-436)
T-Bil 0.6 (0.3-1.3)
CRE (eGFR) 0.88 (0.65-1.06)
eGFR 84.9
BUN 14 (8-22)
CK 91 (61-257)
Serum Blood Sugar 99 (78-110)
Na 141 (137-144)
K 4.6 (3.6-4.8)
Cl 106 (101-108)
Mg 2.0 (1.8-2.3)
Ca 10.3 (8.7-10.1) High (not hyperparathyroidism -- I take vitamin D 1000IU)
IP 3.1 (2.6-4.5)
CRP 0.1> (less than 0.2)
Blood Sugar HbA1c
HbA1c(NGSP) 5.4 (4.6-6.2%)
HbF 0.3%
#C (Peak Area) 1.7%
Protein Fraction
ALB Fraction 62.4 (55.8-66.1%)
(alpha) a1 Fraction 3.9 (2.9-4.9%)
(alpha) a2 Fraction 9.3 (7.1-11.8%)
(beta) B1 Fraction 6.3 (4.7-7.2%)
(beta) B2 Fraction 4.8 (3.2-6.5%)
(gamma) y Fraction 13.3 (11.1-18.8%)
A/G Ratio 1.7 (1.3-1.9)
Immunity
Antids-DNA Antibody- IgG[ELISA] Less than 7 (Less than 12)
Antinuclear antibody [FA] Less than 40 (Less than 40)
AntiRNP antibody[ELISA]
AntiRNP Number [ELISA] Less than 5 (Less than 15)
AntiSS-A/Ro[CLEIA] Less than 1 (Less than 10).
Ferritin 59.1ng/mL (Less than 280ng/mL)
I looked some of them up. I don't know what they all mean. It will be hard to get the referral to ask again and so I don't know what has been ruled out. With the vertigo, I was thinking about an MRI to test for MS. Don't know what has been ruled out here. Sorry if it is vague to you, it sure is to me!!
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