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Thyroid UK
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Any ideas?

So I’m subclinical hypothyroid and the doctor has agreed to not put me on medication but let me have blood tests every 6 months (she said it’s usually every year but as I’m anxious about my health she agreed every 6 months) I’m ok with not taking medication as I do feel well at the moment (if you want to see my results please look at my other posts)

Is there anything I can do to prevent myself from being more hypothyroid or will I eventually get there anyway?

I’m taking vitamin D at the moment, someone says I should take probiotics and be gluten free.

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Anyone?

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Well, you probably will get there in the end, because your TSH is already at 6.5. You are hypo, and all this subclinical rubbish is just to fob people off. You are hypo when your TSH hits three. The thyroid has already been damaged, and even if you manage to subdue the Hashi's, you will still need thyroid hormone replacement for the rest of your life. Continuing to live with a TSH that high could have consequences. Not enough T3 for your brain or your heart...

The thing is with not starting thyroid hormone replacement, that you are just giving your disease carte blanche to continue getting worse. You need your TSH suppressed, to slow things down, but you can't achieve that without thyroid hormone replacement.

You could, of course, try a 100% gluten-free diet, and take selenium. But no guarantees as to how that will work. Apart from that, I don't see what else you can do. Sorry.

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Hi grey goose! Was hoping you would reply always so helpful!

In February my tsh was 1.65 and then October was 0.16 so my endo was saying my tsh is just jumping and not being consistent that’s why she said to monitor it to see where it goes. Does that make sense?

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That's because you have Hashis and every time a bit more of your thyroid is destroyed, it dumps hormone into the blood and your TSH drops and thyroid hormones rise - then, as you have even less thyroid to make hormones, your TSH rises and your thyroid hormones fall. Each time your TSH drops, a bit more of your thyroid has been killed off. A doctor should know that.

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I think you'd be very lucky to find a doctor that knows that :(

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In December it was 6.5 but in February it went to 5.34 so the endo thinks it may normalise again

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Well, I have my doubts. Levels do fluctuate when you have Hashi's. It may go back to around 1 for a while, but not permanently. So, no, that doesn't make much sense. I don't think your doctor knows very much about Hashi's.

And, by the way, anxiety is a hypo symptom.

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Ok not sure what to do now as I’ve had a couple different responses but thank you!

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Healthanxietyhater,

Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies and may delay progression to overt hypothyroidism.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

healthunlocked.com/thyroidu...

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Hi clutter, my gp says she did not Medicate me as my tsh was 1.65 and then October it was 0.16 only recently it reached 6 I think so she said to monitor it to see if it will normalise

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Healthanxietyhater,

It's unlikely to normalise so if you start feeling symptomatic do go back and ask for Levothyroxine. Most GPs do prescribe Levothyroxine in the presence of positive antibodies.

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Will I know for sure when the symptoms come? As I do feel like crap sometimes but I suppose it’s normal as not everyone feels good everyday and it’s not severe to the point I can’t get out of bed or anything

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Healthanxietyhater,

Typical hypothyroid symptoms are listed in thyroiduk.org.uk/tuk/about_...

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health.harvard.edu/blog/for...

Does this make sense?

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Healthanxietyhater,

If TSH is <10 and you aren't symptomatic then it's fine not to medicate.

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Ok that doesn’t apply to me right? As the highest my TSH has been is 6..

there are so many people here that are so educated in the thyroid disease and I’m truly thankful but I’m assuming because it’s because you’ve been fobbed off by doctors that’s why you done your research!

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Healthanxietyhater,

Yep, if I'd have felt good with the treatment I was getting I wouldn't have needed to research why I was feeling so ill.

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I’m sorry to hear that, I hope you feel better. I was the same with my anxiety, I went to therapy but no one really explained to me how someone’s body can react this way due to me being stressed.. I decided to educated myself instead and managed to overcome it and found my triggers. Hopefully this new thyroid issue I have will be the same.

One more question though, some people say it’s a must and it’s beneficial to treat it if i even have subclinical hypothyroidism even if I have no symptoms but of course you and also the blog I sent you says it shouldn’t be the case because it could be doing more damaging? Bit confused

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Healthanxietyhater,

If you feel well I don't see the point in medicating. If you don't feel well and TSH is between 5 - 10 I think medicating will probably be helpful. Pretty much everyone agrees that TSH >10 should be medicated.

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That makes perfect sense thanks a lot!

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Real "subclinical" hypo would be no symptoms, and TSH around 3 and Free T3 and T4 near bottom of range. If you really have no symptoms - no fatigue, sadness, anxiety, bla feeling, low sex drive, constipation, poor sleep, etc, then it is subclinical. But if no symptoms, how come your thyroid bloods were tested?

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Hi there :) my TSH has been changing up and down, the highest it’s been is 6 but my free T3 and T4 have been normal. If you’d like look at my last post for my results. We decided to test this as I had high anxiety at the time but it was due to the stress of work.

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I wondered that, too!

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Healthanxietyhater, if you've got a lot of anxiety, I don't think we can say you're not showing symptoms. In my experience, anxiety is one of the most prominent symptoms people become aware of.

It's easy to miss some of the other symptoms, like physical tiredness or being very disorganised when you're feeling anxious. Symptoms tend to creep up on people. And its much easier to accept "I'm lazy and scatterbrained", than to accept being sick, and even that these things aren't your fault.

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Unfortunately this happens to us all. Doctors are told to leave tsh until it reaches 10 or above.

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Hmm ok do I have no say in this?

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It’s your body, of course you do! Most doctors do not understand Hashimoto’s. What are your antibody levels? Left untreated and your thyroid flounders and zig zags, don’t be surprised when you are suddenly so ill you can’t finction. By then your antibodies will be even more elevated, and your thyroid will be even more damaged. Your thyroid hormones will be too low.

I was left untreated for 4-5 months by doctors who didn’t understand Hashimoto’s or thyroid levels. My TPO went from around 1k to beyond 7k. It took over a year to get it down to 1500. Since then it’s never gotten lower than 1k and is currently at 3700. What do these high numbers mean? They mean my body is in overdrive to try to get rid of my thyroid. Medication has put my hormone levels about where they should be and barely any hypo symptoms. Save yourself if you can! ;-)

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Hi shooting stars thanks for your comment. Can you read my post “please help me understand” all the details are all in there if you could help that’ll be great

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Hi Healthanxietyhater, I've noticed on this thread you've asked a lot of people to go back and look at past posts. This is quite a lot of work for people, especially if they've got fatigue or concentration problems. I expect hardly anyone in this thread has clicked back to look at your blood results, for example.

I think you'd get better responses if you did the work yourself, click back to your own old post, cut and paste what you want people to see, and then it's much more likely people will see it. I think you'd be getting more accurate results in this thread if you'd pasted in your blood test results. Because then everyone giving you advice would have all the information at their finger tips!

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I 100% agree!!!

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Agree with what?

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With what was said about people having to go back & check your previous posts. The easier you make it for people, the more will reply with advice & suggestions.

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I would look at the facebook group

Magnesium advocacy group they seem to have members who have cured their hypothyroid

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Hypothyroid is much different than Hashimoto’s, of which there is no cure. It’s a life time disease.

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There's no cure for a damaged pituitary either or, I think, any type of hypo.

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You're right, no cure for damaged pituitary. There are some people who have had temporary hypothyroidism, take medication for awhile to jump start their thyroid, and then eventually go off medication. I have a male friend who had extreme hypothyroidism that doctors couldn't figure out. Probably because their first thought wasn't thyroid on a man. Eventually it was discovered that his levels were horrendous. He went on levo for about 3 years, his thyroid became normal again, and he hasn't had hypothyroidism ever since.

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If you think i know nothing about Thyroid your very wrong ....given the 5 in my family all with Hashimotos and Central Hypothyroid and husband originally had Graves but probably also Hashimotos ....none of them are well on either Levo or T3 either but they are fine on NDT

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Good. Exactly my point. Not every one is equal, results vary. Some people are ok on NDT. Many people don’t do well on just one hormone, T4 or T3, but need both. NDT is better for them because it’s not a singular hormone. Some people with Hashimoto’s don’t do well on NDT because of antigens orfillers. Some do just fine.

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Hi I was having problems with my eyes ,floaters and notice right eye a bit blurry at times.long story ....short referred to hospital eye specialist who thinks I may have thyroid eye disease. So he asked my Dr to do another thyroid blood test.as he said by looking at my last blood test showed I was on the lower side of normal.well had test done few weeks ago TSH came back OK so did TSH receptor ABS.but the TPO thyroid peroxidase antibody came back positive.Dr rang me Friday and asked me to go see him next Friday to discuss what blood test means ? So not sure what to ask him ?

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I’m not sure what to tell you I’m afraid, I’m not educated at all in the thyroid disease area.. but there is a lot of people that are really helpful. Make a post so that everyone can see and upload your blood test results. All the best xx

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Thank you I'm going to doctor on Friday ....see what he says as this is all new to me ( thyroid)

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Ahh same here! It seems like a whole lot to learn doesn’t it? I’ve been on a few scary ones that aren’t true. How old are you if you don’t mind me asking?

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I'm 62 yr old female and had anxiety most of my life.but last 2 years anxiety been very bad .

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I was just wondering if this TPO antibody positive result could cause anxiety to get worse ?

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Hi Jessie, please make a post so that everyone can see because people can only read mine. If you make another one, more attention will be brought. I can’t help you as I don’t know much about thyroid but like I said there are plenty of people that are helpful

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It’s the top right corner jessiejakes

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I understand what you mean about having anxiety, I’m 22 and I’ve had it since I was 18 on and off. There will be better days Jessie this too will soon pass just like the other bad days you had! Good luck with it all im here anytime if you want a chat!

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Do you have Graves Disease in addition to Hashimoto’s? Graves is usually the one that has associated eye disease, not Hashi’s. You can have both Graves and Hashi’s at the same time. Are you seeing an eye doctor?

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Hi shooting stars thank you for answering my queries. I'm seeing doctor about the results of blood test I had done the other week as TPO antibodies came back positive.TSH was OK also TSH receptor ABS was OK.so not sure what is going on till I see him.I have seen 3 x eye specialists since Xmas and got to have another two appointments one for glaucoma clinic as had cupping in both eyes which can be a sign of glaucoma.plus got to see another eye specialist as my left lid has some lid retention.so all rather confusing.will hopefully know more on Friday when I see him he did ring me and said come in to see me and he would be referring me to a thyroid specialist.could I have graves ? If I only have positive TPO antibody ?

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You're welcome. You have Hashimoto's since your TPO is positive. Did you also TGab, which can be positive in both Hashi's and Graves? You can have both diseases at the same time, too. What are your TSH, FT3 and FT4 levels, and the ranges of each? Some doctors think that in the range TSH is OK, when it's not. Your eye problems may or may not be related.

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Hi this was on my notes( view test results) TSH receptor ABS <0.3 iu/L( 0.0-0.9) serum TSH level 0.559 ( 0.38- 5.34 ) miu/L TPO thyroid peroxidase antibody positive didn't have any thing else next to this one only needs to speak with doctor .is the above any help ? Doesn't mean anything to me.

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That level of TSH when not on thyroid hormones is quite low, maybe almost too low. Thyroid eye disease and naturally very low TSH can mean Graves. TSH alone is not how your thyroid is analyzed. It's FT3 and FT4, your thyroid hormones in conjunction with TSH.

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The eye specialist sent letter to my doctors and said can you please re- test this lady for thyroid function as I noticed on a previous blood test although normal her TSH levels were on the lower side of normal.I presume the figures in brackets is the normal levels ( what the text books say ) my reading are the ones before so although normal they are on the lower side of normal ? Do you think ?

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Lots of things help us feel better so I can understand for instance if you optimise your vitamins etc then you can feel better butvatcthe end of the day you will need conventional treatment and may be its better to have a low dose than to risk needing a higher dose to start with.

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It is a mistake, in my opinion, for doctors to medicate or not based on tsh alone. My tsh was always ‘within range’ but I was so tired I could barely stand and I had put on 3 stones in weight. I gave up on the GP.

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If you are what the NHS calls subclinical you are probably overtly hypo and too much damage has been done to be reversed. However, if you want to try, I suggest joining Roderick Lane's FB group (Thyroid Care Group) and start their naturopathic protocol of probiotics, supplements, keto diet etc. I think you probably need thyroid hormones, though.

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Low in range free t4 and high TSH = hypo. And your folate is dreadful.

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what can I do about my folate? My GP says it was in range

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in range is no good, it needs to be half way through range. Buy a decent methylfolate supplement. And your vitamin D is deficient, so your GP should be prescribing a loading dose according to CCG guidelines for your area (not just 800iu, for example) - it's usually about 10,000 iu or more for several weeks then you need about 2000iu to maintain the recommended levels of high 90s to 150. Look up Seaside Suzie's posts. Your B12 and ferritin are OK.

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Okay I will do that thanks again. How many units of methylfolate would you suggest? Yes the vitamin D has been dealt with the GP gave me plenachol for 40,000 IU capsules for once in the course of 7 weeks. Now I’ve finished I am self medicating as the GP says it’s fine. She didn’t give me a blood test but seaside suzie suggested I should buy my own blood test to check.

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I don't think your doctor sounds very good. How can she know something is "fine" without testing? Definitely spend the £30 or so for your own test. two schools of thought on methylfolate: see here methyl-life.com/dosage/ You might just want to start with one, then two 400mcg and see how you go.

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No wonder I had those pesky little ulcers. Literally even if I bit my cheek by accident it’ll turn into an ulcer

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I have big problems with mouth ulcers, and I will always get one if I bite any part of my mouth accidentally. Most of them just appear for no obvious reason though.

I can't say what it was that improved things for me, but compared to how bad they were after I stopped smoking several years ago, they have improved a lot - they are smaller, less painful, and they don't last as long. I even have the odd few days with no ulcers at all, although it is rare.

The things I've done for myself are doing my best to optimise iron and ferritin, increasing my B12 and my folate, optimising my vitamin D, improving my T3, lowering my cortisol.

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Can I self medicate?

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