I have been borderline Subclinical hypothyroidism for around 10 years. The GP put me on levothyroxine 2013, I took a low dose for a month or two but couldn’t tolerate it (palpitations), so I stopped. I was referred to Endo who did a check on my antibodies - was clear. Every year, my tsh was either just above or within range. Lately, it’s started to creep up again, around 4.88 and 5.88 few weeks later, just above the range. My doc asked me if I want to try levothyroxine again, I last tried this a year ago and took for couple months. When I upped from 25 to 50, started to feel sweaty, hot and palpitations so I stopped. Have started hrt end of Jan this year. My b12 was slightly low so I’ve been taking shots every few months for the last 2/3 years which has helped massively with energy. My ferritin has always been low and is 13. I’m also taking vitamin D. My doc wrote to the gynecologist for advice. They said my tsh is not high enough for levothyroxine and he doesn’t recommend another antibodies check because it would not change the management. He said my symptoms (weight gain, feeling cold, brain fog etc) are not thyroid related! So what to do now? I’m having a chat with my GP tomorrow afternoon about next steps.
subclinical - do I need levo? : I have been... - Thyroid UK
subclinical - do I need levo?
While I can’t understand why your GP would seek advise from a gynaecologist over an endocrinologist, it seems to me you appear to have some choice as your GP initiated trials of Levothyroxine before and again offered again more recently.
By all means have antibodies tested again. These may tell you about the the type of hypothyroidism you may have/go on to develop.
Based on your symptoms and the information about your vitamins, it seems clear to me you would benefit from a fair trial of Levothyroxine. I am guessing your dose wasn’t titrated upwards every 4/6/8/ or 12 weeks. The frequency of titration varies based on GP and interpretation of blood tests.
Things to bear in mind, previously you have been on low doses and low does are especially bound to make a peraon feel worse. On the forum this is explained as Levothyroxine doesn’t top up the thyroid hormone, it replaces it. Therefore you need to be on a dose that resolves symptoms. Even those not on low doses many feel worse before getting better with Levothyroxine.
Many also do not and you may be one of those that are indeed intolerant to Levothyroxine. But based on the information you shared it’s hard to say this with any assurance. You may not nave got on with Levothyroxine due to low dose, the brand you was taking, or because vitamins and minerals were not optimised before or while treating thyroid hormone. Iron for example is very much needed to make good use of thyroid hormone. And. I note you are deficient. Anything less than 30 confirms deficiency.
I do appreciate you appeared to suffer from over medicated type symptoms (impossible to know that’s what they were) such as palpitations and sweating. These may have settled out in time. But, I am pointing it out here that it is also acknowledged both on the forum and medical literature that those who have been severely hypothyroid or hypothyroid for some time before beginning treatment may name from a slower approach.
I hope that helps and I’m sure one of the admins will be along soon enough to explain better.
thanks, that’s really helpful. Sorry I meant endocrinologist, not the gynecologist (brain fog!). So should I try to get T3 and full panel checks (which may not be available on the nhs) before trialling levothyroxine again? I started on 25 and didn’t go up to 50 for ages and then realised I couldn’t take it within a week or two of the increase…what do you think might be an acceptable starting dose, 50? Also, do you recommend your private endocrinologist?
50mcg is a starter dose. 25mcg is starter dose for people with heart issues. Titration happens every 4/6/8 or 12 weeks depending on the knowledge of the GP, interpretation of your blood tests, and your own advocacy and insistence a lot of the times.
You need a full thyroid panel. In the first instance, try a different GP at the practice and emphasis you have symptoms of hypothyroidism alongside the TSH readings. As for the endocrinologist opinion, the GP doesn’t need to accept it and you can seek a second opinion.
If you want to save the costs of tests, you can say to GP you’ve had private tests and they’ve come back abnormal. They are more likely to test in these scenarios. Beware, a lot of the times FT3 blood tests are not done which appears to be a postcode lottery or GPs not knowing how to order tests to the labs approval. So, you may better off getting a private test too.
I can not recommend a private endocrinologist.
Thank you so much. To be fair, the last GP I spoke to did ask if I wanted to trial levo again or whether to get the opinion from the endo, I chose the latter. I’ll be speaking to a different GP this afternoon so I’ll ask her for the full thyroid panels check, if she refuses, I’ll get this done privately. I’m sure I had T3 checked some years back, I asked the nurse to write it on the blood form. She may have gotten a telling off for that, but I think it came back normal. I’m not sure whether I would be able to get iron infusions on the nhs or if I should try and get these privately (but they seem costly), I wondered if the low ferritin might be raising the tsh.
Looks like Superdrug also does full thyroid panels for £89 :
•Thyroid- Stimulating- Hormone (TSH)
• Free thyroxine (FT4)
• Free triiodothyronine (FT3)
• Thyroid peroxidase Antibodies (TPO)
• Thyroglobulin Antibodies (TgAb)
Theres some controversy re sub-clinical hypothyroidism treatment, as indicated in the report linked below by a well-respected practitioner. He also refers to the need for a full thyroid panel. You don't appear to have had this and others on here are also likely to suggest. It may be best to see a qualified Nutritional Therapist that specialises in thyroid/endocrine. I can send some contact details if this is of interest.
draxe.com/health/subclinica...
You have answered my question about the full thyroid panel. Thank you. So should I get that done first and then go to a nutritionist who specialises in thyroid? Yes, please send me the contact details. Just not sure what to ask of my GP when I speak to her later re levothyroxine.
Below's 1 list of qualified Nutritional Therapists from which to choose. Its likely that he/she will ask for a full panel and there's currently a 25% offer with Medichecks (2nd link, note Code BF25). However, you could await NT's advice and Medichecks have regular 20% off discounts so either way may be OK.
As others on here will tell you better than I, discussions with GPs on levo/thyroid are generally unproductive but good luck with that and/or NTs.
theanp.co.uk/member-directory/
medichecks.com/products/adv...
Thank you so much xx
No problem.
Also I presume you noted Dr Axe's comments & scientific links that medication is often not the best treatment approach for SCH. Id be interested to know if your GP has any views on that and/or if he/she refuses levo because it may need to be for life.
Feel free to pte message me if you find out.
Btw Ive just had a Medichecks email extending the 25% offer by 24h!.
Yes I saw that in tbe article you mean? Or is it a separate article re Dr Axe. The GPs at my surgery have been very willing to give me levo, I’ve been resisting and been intolerant so I keep stopping it. I’ll let you know what GP says
I’ve read that a TSH above 2.5 will give you hashimoto’s symptoms and also my private only endocrinologist explained this to me. The NHS do set their ranges too wide as in other EU countries like Germany once your TSH gets to above 3.0 they will treat you. Usually a healthy thyroid TSH is between 1.0-2.0. You may be on the cusp of your thyroid failing. Best thing is to check antibodies periodically and see if they are raised. Dieting hard can also cause the TSH to raise as your body tries to avoid starvation mode.
Thanks I didn’t know that about dieting. I’ve been on a few one week juice retreats over the last few years, which I thought might be helping but possibly might be making it worse! I will try to insist to my GP to refer me to check antibodies but looks like I may have to go private for that. If you can recommend your private Endo that would be great too, I’m in NW London.
It’s just a thought about dieting if you diet hard. Your body will tend to want to slow down in order to maintain energy to run your vital organs. And the slowing down will be your thyroid going higher to stop stimulation by T4 and T3. I don’t think it would happen if your only doing a bit of dieting.
ESSENTIAL to maintain GOOD vitamin levels in order to tolerate levothyroxine
Vitamin levels are poor BECAUSE you are hypothyroid
When hypothyroid we develop low stomach acid and this leads to poor nutrient absorption
How much vitamin D are you taking
Test twice year when supplementing
Request GP test vitamin D and folate
Ferritin at 13 is extremely deficient
Request GP do full iron panel for anaemia including ferritin
Definitely going to need iron supplements, but possibly iron infusion
Any obvious reason for anaemia?
Are you vegetarian or vegan
Heavy periods?
As you have high thyroid antibodies this confirms autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Request coeliac blood test if not yet been tested - as per NICE Guidelines
nice.org.uk/guidance/ng20/c...
1.1 Recognition of coeliac disease
1.1.1 Offer serological testing for coeliac disease to:
people with any of the following:
persistent unexplained abdominal or gastrointestinal symptoms
faltering growth
prolonged fatigue
unexpected weight loss
severe or persistent mouth ulcers
unexplained iron, vitamin B12 or folate deficiency
type 1 diabetes, at diagnosis
autoimmune thyroid disease, at diagnosis
irritable bowel syndrome (in adults)
first‑degree relatives of people with coeliac disease.
Thanks! Had full blood count and heamoglobin all looks fine, so I don’t think it’s anaemia. I’ve not had a period for a few years (post menopausal, 53) but some years ago my ferritin was 5! GP prescribed ferrous fumarate, I took for a while. Stopped, caused constipation. Tried to have lots of spinach in my smoothies etc, the maximum I got my iron level to was 20. Had some heavy one off bleeding recently which is why I asked for blood tests again. I’ve only just started the vitamin D, but they are leftovers from my mum’s solgar bottle. I’ll check the strength but I’ll need to order some new ones if anyone recommends?
What you say about low stomach acid is interesting, I had a stool test through my health plan (which doesn’t seem to include thyroid) and I tested positive for H pylori. Not done anything about it as I don’t fancy going on loads of antibiotics.
I did ask my GP about iron infusions around the time my ferritin was 5 and they said I’m not aneamic. I have asked again and will bring it up again when I speak to her later.
I’m pescatarian.
My antibodies test was clear in 2013 so I don’t think I have autoimmune thyroid disease? I had ceoliac a few years ago and it was clear…
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
Once you have had folate levels tested recommend starting on daily vitamin B complex
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels between injections
If your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Highly effective B12 drops
natureprovides.com/products...
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Other options
healthunlocked.com/thyroidu....
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if under 500
Post discussing how biotin can affect test results
healthunlocked.com/thyroidu...
helvella.blogspot.com/p/hel...
Thanks! My B12 always seems quite high so I’ve been wondering whether to just reduce to every 6 months rather than quarterly. I mentioned to my GP and they said that’s fine that I can just go when I want and let the nurse know! I was due one Oct 16 but will delay this to mid Dec, which will be 5 months. Do I still need daily B vitamin if my B12 is high(between 300-1100)
Ferritin
cks.nice.org.uk/topics/anae...
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Medichecks iron panel test
medichecks.com/products/iro...
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
healthunlocked.com/thyroidu...
Posts discussing Three Arrows as very effective supplement
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Iron patches
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Good iron but low ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Shellfish and Mussels are excellent source of iron
healthline.com/nutrition/he...
Iron deficiency without anaemia
healthunlocked.com/thyroidu...
Ferritin over 100 to alleviate symptoms
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Great research article discussing similar…..ferritin over 100 often necessary
ncbi.nlm.nih.gov/pmc/articl...
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Ferritin range on Medichecks
healthunlocked.com/thyroidu...
Inflammation affecting ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Whilst I understand your reluctance to try levo again, if you lived elsewhere you would not be classed as subclinical.
The following countries USA, Germany, Switzerland, Austria, Norway, Sweden, and Belgium have a upper limit for TSH between 2.5-3. Germany and Switzerland are 3.2. Anything above it is treatable hypothyroidism in those countries.
I recently read an article about "research" of a group of people who had TSH above 3, were deemed subclinical, and they left them for 2 years to see what happened. With some the TSH went below 3, but many just went higher. His results proved to him that people claimed to have thyroid problems in order to get free prescriptions! You could not make it up!
Thanks. I’m not so much reluctant, it’s just that the other view is that if one is subclinical, it’s not clearcut and that it could be reversed with diet and stress management and exercise. I just wasn’t sure if a full thyroid panel check might reveal that levo is not necessary for example, actually I’m not quite sure what the purpose is of the full panel check and whether that could lead to a different outcome ie other than levothyroxine
Good luck!
Get a full panel done and then come back with the results. The lovely people here will help you further. Yes, it could be low vits for example, as this effects how the thyroid works of course. This is such a lovely forum and literally saved my life.
If I were you, before taking final decision I would listen to the episodes 95-99 (link below) about all things related to thyroid problems including - in the last 99 part - about Levothyroxine. I only regret I was not able to listen to something like that when I started Levo several years ago and having a lot of problems with it. If I knew what I know now my life would be different.
The link below is to the first part (95), but you will see links to parts 96-99 on the same web page.
jayfeldmanwellness.com/ep-9...
Thank you. Were you also subclinical / borderline?
Yes
For a while? I’ve been in that position for 10 years…
It might have been for few years, considering my symptoms, before doctors came to an astonishingly creative idea to check my thyroid levels. I was quite ignorant then concerning health and had a rather strange idea that doctors know something and that their wish is to help people.
Lots of advice here giving different reasons why you may not be tolerating thyroxine. I hesitate to throw another idea into the mix, especially as I don’t know if it fits with your symptoms, but do you have problems with your adrenals? While your GP is looking for answers they’ll probably be happy to do a serum Cortisol test first thing in the morning. They likely won’t be able to interpret the result, but people on here will.
Not what you're looking for?
You may also like...
Confused. Do I really need Levo?
150g Levo and cannot lose weight - do i need other meds?
Do I need to increase my Levo?
do I have subclinical hyperthyroidism?
Am I really subclinical?
Fluctuating between subclinical and overt hypo TSH levels, should and how do I get treated?
Do you really need more levo
Do I need supplements?
