Feeling like a YoYo

Been dealing with hashimotos going on 16 years. I call it the "Roller Coaster Ride From Hell"!

I have been as high as 300 mcg Levthyroxin due to Antibodies being high.

Hashimotos makes the TSH SWING Up&down. When your numbers are high its Hypo & when the numbers are low its Hyper!

Example of hashimotos humor (Not Funny).

March 05,2016 TSH (24.81)-(Free T4 0.8) HYPO

Doctor increases Levthyroxin from 150 mcg to 175 mcg

Felt Lethargic ,weighted down like I couldn't move felt horrible after 5 days on increase.

Message my doctor he lowered me back down to 150mcg Levthyroxin.

Had blood work May 12, 2016 TSH(0.12) Free T4 (1.2) HYPER

So I was HYPO doc increased Meds however due to my symptoms after only 5 days on increased Lowered Back Down to 150mcg! So this is illogical

Now bloodwork done July 9, 2016 shows TSH(24.67) & FREE T4 (0.8) HYPO again,so they ask "Are You Taking Your Meds"? OMG well yeah !!!!

Their thinking my Pituatary yet ACTH just done recently was Normal & Prolactin was Normal so not sure if they'll retest or do some other test.

This is NOT the first time this has happen since being diagnosed. Oh I also Don't Absorb B12 have to get shot & was just diagnosed with Neuropathy and I'm NOT Diabetic!!!

My point I want to make is Ask Questions and Keep Asking tell you Get Answers because they love to make you feel like ITS ALL IN YOUR HEAD!!

Due to my persistence I found out my Numbing Tingling in hands & feet quite honestly they feel dead like their not there Neurologist diagnosed Neuropathy!!!

Furthermore they're going do investigate further into TSH up&down

So if you stop asking even though they are ignoring you'll never get answers. It's Your Body & Your the one Suffering.

6 Replies

  • Retrowoman, if you have Hashi's, you should have your TSH suppressed - the less gland activity there is, the less antibody activity there is. Are you gluten-free? Do you take selenium? Those things will help lower your antibodies.

    If you have trouble increasing your dose to the point where your TSH is zero, then you probably have other nutritional deficiencies apart from B12 - are you taking a B complex with your B12 shots? Have you had your vit D, folate and ferritin tested.

    It is fairly frequent to have difficulty absorbing nutrients when you are hypo, because stomach acid is low. You could try increasing your stomach acid and taking pre/probiotics.

    Doctors won't be able to tell you any of that, because they don't know any of it. And the reason they don't listen to you, is because they have no idea how to help you. They know nothing about symptoms. That is why we have to learn as much as we can about our disease, and take charge of our own health. And, if you're not satisfied with your doctors, you can always self-treat. :)

  • Hi thanks for responding so quick with this being said ;

    My Calcium was low they only check that after I requested a Bone Density test whick shows I have Osteoporosis which is cause from Levthyroxin. Doctors fail to tell you this or as you have stated Don't know. I was tested for Gluten it came back negative. No B Compex just B12. I forgot to add they also have me on Liothyronie 5 mg due to the Levthyroxin didn't seem to be working going Hypo-Hyper. Started feeling better and in may the Female doctor who did my PAP Examine wouldn't refill went without the Liothyronie for 8 Days Felt really ill had to wait for my primary to send in another prescription and July bloodwork came back hypo. He was on Vacation and doctor over seeing his patients wouldn't refill either.

    My primary doctor does not agree with my Endo he referred me to & we will be discussing this coming Wednesday @ my Appt.

    Being Hashimotos is an Auto Immune in fact the first Auto Immune ,what I have come to understand the reason we don't feel better on a continuous bases is because doctors are taught at med school to look @ the TSH an therefore raise&lower our medication. Also their not treating the root of the problem which is the auto immune as you are indicating by the recommendations you have made.

    I have tried probiotics did not help with constant TSH Up&down . Help some with my reflux but that only lasted a short time so I stopped using it.

    The Vitamine D also goes Up&down an the Calcium I'm trying to get through my foods due to the high concentration of pill form can cause more problems besides extreme constipation which as you well know being Hypo already causes this problem .

    I will ask my doctor about the B Complex,Folate &ferritin.

    As far as treating myself I'm not comfortable doing that and also feel that my getting my doctors to listen and do their job will bennifit the next person with hashimotos. In order for doctors to treat their patients with an Open Mind it takes us to Open their Minds. Know what I mean.?

  • Levo does not cause osteoporosis. Where did you get that idea? You’re more likely to get osteoporosis if you’re hypo. And if you have nutritional deficiencies. Not just calcium, but vit D3, magnesium, zinc, etc. If you are taking vit D3, that will increase calcium absorption from food, so you don’t need to supplement calcium. BUT you need to take vit K2 to make sure that calcium goes into the bones, and not the tissues.

    You have hypo and hyper symptoms – you are not clinically hyper. That’s what Hashi’s does. And having a low/suppressed TSH when you are on thyroid hormone replacement, does not make you ‘hyper’, either. You might be over-replaced, but you would have to see your FT3 to know that. With Hashi’s you need the TSH suppressed to stop the swing between symptoms.

    Yes, I know Hashi’s is an autoimmune disease. And I know what doctors are taught in med school. But you don’t have to agree to all this raising and lowering. Voice your objections. Your doctor is there to advise you, not dictate to you. You don’t have to take his advice. But, if you say nothing, that is taken as agreement and consent.

    However, treating the root of the problem is isn’t possible. Because no-one really knows what the root of the problem is. There are many theories, like leaky gut, but doctors have no idea how to fix a leaky gut. That is where you have to take charge, do your research and treat yourself. There is not ‘cure’, as such, for autoimmune diseases.

    Probiotics are not supposed to help with your TSH. That’s not what they do. They are supposed to improve your digestion – and help with leaky gut – so that you better absorb your nutrients.

    If you have acid reflux, it’s probably because of the low stomach acid. In order to fix that, you could try some organic apple cider vinegar (with the Mother) in orange juice, before meals. Or, check out betain and pepsin on Amazon.

    If you have constipation, you are probably low on magnesium – most people are. But, no point in testing for that, because of the way the body handles magnesium levels. Just take some. High doses of vit C can also help.

    Ask your doctor about the B complex etc if you like, but he will have no idea. The don't 'do' nutrition in med school. Just ask for the tests and buy your own.

    Yes, I realise this goes against the grain. But, I can assure you that trying to get doctors to listen and open there minds, is not going to work. Thousands of us have been trying this for many, many years, and haven’t even made a dint in their ignorance! They do not want to learn! How long are you going to stay sick before you finally realise that and give up? So very many of us now self-treat – and are doing a much better job of it than any doctor ever did!

    PS you really need that B complex, because the Bs all work together, not individually, so no point in just taking one. They need to be kept balanced.

  • Just to add to Grey Goose's sage advice - I'd recommend taking heed, she sure knows her stuff :) ...

    ... a negative test for gluten does not mean that you are not gluten intolerant. A huge number of Hashi's patients find they feel better on a diet without gluten in it. Not all by all means - but it's worth trying. If it makes no difference you can go back to eating it again.

  • T3 - the only thing that ever worked for me. I was on 50mg - 350mg of T4 for 2 years and felt like death. T3 reversed the damage and I can run 6 miles! I was told the T3 would cause osteoporosis but my bone scan was great - have had a suppressed TSH for 4.5 years and also now antibody free. Seriously it's not hard to be well on T3 I eat healthy but not in a regime of supplements and sugar, dairy , gluten etc, etc.

    Think I was in a cycle of Hypothyroid and reverse t3 loop - to be honest your symptoms sound like hypothyroid and once you're on the right course either NDT or T3 life stops being a struggle. Wish you all the best xx

  • Have you tried AIP diet? I started a couple of months ago and my antibodies have dropped. And my thyroid readings are much more stable. Giving up gluten has really helped massively.

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