I started taking levothyroxine (25mcg) at the beginning of October as I was diagnosed with Hashimotos (high thyroid antibodies, but normal thyroid hormone levels) and began to feel a lot better: my hair started growing, my generalised anxiety decreased, my energy levels improved, my periods were less heavy and I was in a better mood.
However, within the last couple of months, my obsessive compulsive disorder thoughts became unbearable and my brain felt like it was "on fire". I stopped taking levothyroxine as I read a post here about the side effects of the medication, and the negative symptoms decreased rapidly within less than a week of coming off of the medication. However, all my other old symptoms mentioned above as being helped by levothyroxine are returning, and I am feeling more tired, my hair has started falling out again, I am getting random allergy flares/hives, and I am suffering generalised anxiety and low mood again.
I do not know what this means... I think I do perhaps need thyroid support, but I cannot tolerate levothyroxine due to my OCD.
Any help would be appreciated,
Thank you very much!
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Kg147
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I have heard that too! I used to take NorthStar when I was younger which I believe was the same thing, but didn't ever feel as bad as I did on Wockhardt.
Hi geworgie3008 - could being on a low dose for too long a time cause my OCD to worsen? I was on 25mcg for 2 months. Unfortunately I have not had any recent blood tests as my endocrinologist was ill, and has not requested them yet. I wanted to get blood tests before coming off of it but couldn't stand the symptoms any longer!
Once you start taking external thyroid hormone (levo) you thyroid stops producing its own.
So you are likely feeling more hypo now than you did before taking levo.
Anxiety is a well documented symptom of hypothyroidism.
Personally, I have never suffered OCD but I did feel my anxiety was out of control and bordering on becoming much more serious before I was treated with Levo.
Once I was on a good level, my anxiety almost entirely disappeared.
Why not try taking your medication of 25mcg every other day? The half-life of levothyroxine is approx. 7 days. That means that one can safely plan the medication in intervals without risk. Studies have been done showing that the difference in percent (%) over a 7 day interval between everyday dosage and dosage applied at intervals within a week vary insignificantly. Also, the theories surrounding recommended dosage are based on statistical models that vary depending on age group, physical condition, as well as other factors. If you ask two different endos, you will get two different answers. This is unfortunate but true.
Indeed, there is no scientific evidence that the TSH value MUST be 0. New studies in the US and Europe and showing quite the contrary. The Medical Website "Update" (USA) has plenty of reliable info on the subject. In any event, if you feel better with a slightly higher TSH, assuming your other values are "normal", then there should be no stress on getting the TSH down to 0. But, this is where it get complicated. You should discuss this with a competent and sympathetic specialist who LISTENS.
Hello Zendo, thank you - I did not realise I could manipulate my doses like this! I am however worried about being on levothyroxine at all due to my OCD. It had not been as bad as that before, and so I worry that any dose may cause even a slight worsening.
The usual starting dose of levothyroxine is 50mcg unless the person has a heart complaint and I think the introductory dose would then be 25mcg.
25mcg is a very low dose and there should be frequent ncrements of 25mcg until the TSH (thyroid stimulating hormone) is 1 or lower and if the patient's symptoms are beginning to be resolved.
Also B12, Vit D, iron, ferritin and folate should also have been tested.
Hi Shaws - I was a bit worried about my starting dose actually, but I think the reason was that I didn't have low thyroid hormones, just high thyroid antibodies? I will contact my endocrinologist once he is back in work, but I am worried that increasing my dose will mean I am still stuck with the severe OCD, or would this improve with increased dose?
Remember to stop taking vitamin B complex a week before ALL BLOOD TESTS as it contains biotin and biotin supplements can falsely affect test results
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Hi Kg147, it could be one or more of your B complex that caused the nasty side effects, such as niacin (could cause an increase in serotonin and general brain activity and the timing seems about right) and while the Levo was helping you initially, and rightly so, the B vitamins might have been too much. It might be best to eliminate these rather than the Levo first to see how things go.
I’ve suffered with anxiety/ panic in the past due to being under medicated with Levo and not having key vitamins optimal. My panic-state got so bad that my GP referred me to a psychotherapist & diagnosed’ health anxiety’. Joining this forum was transformative for me, as I realised that the panic I felt was due to being under medicated with Levo. Following suggestions here, I’ve really found magnesium to have a calming effect and take magnesium glycinate in an evening. It’s gentle in the stomach and aids sleep. I hope this information helps!
Hi Buddy195 - that is really interesting! I am worried that increasing my dose will make my OCD symptoms worse (although from what you have said i assume not to be the case!).I have tried a few magnesium tablets but I can't say they have been gentle on the stomach, but I will try magnesium glycinate, thank you!
Getting both my Levo dosage and key vitamins (Vit D, ferritin, B12, folate) high in range has reduced my anxiety MASSIVELY. I cannot thank SeasideSusie , humanbean (and other lovely forum members) enough for helping me understand the importance of OPTIMAL medication and vitamins. I’m just passing on knowledge that I’ve gained here!
I would agree with the magnesium theory and practice - low magnesium increases TSH. If you're converting ok a rise in TSH, due to low magnesium, will cause all sorts of problems of hyper-ism.
Bloods should be retested 6-8 weeks after each dose increase in levothyroxine
Most likely reason you started to feel worse is that you are ready for next 25mcg dose increase in levothyroxine
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
Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels at this test
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Hello SlowDragon, thank you for all of this information! I haven't actually been offered a follow-up blood test since starting 25mcg levothyroxine - my endocrinologist started me on a low dose as I'm not sure he knew what I needed as my thyroid hormones were normal, but antibodies are high.I have subsequently given up gluten and dairy, and am taking zinc, vitamin D, vitamin B complex, magnesium and a probiotic.
Would you recommend carrying on with levothyroxine until I get another blood test?
Beautifull mind is blocked.On 8 girls 1 boy has tyroid gland like troubles.
1. If tests don't show, why to take thyroid hormones? Well if symptoms of hypothyroidism are present. But it should be proven by tests. Expecially FT3. Level can be low or not high enough. So why doctors increase dose slowly. Other reason is that all thiroid medicine and iodine supplents should be introduced by 1/10 or even 1/20 of goal dose. Increasing slowly. Atherwise it will be diagnosed like allergy or intolerance on iodine (nonsense). Body just need time to accomodate. Doctors prescribe thyroid hormones from practice experience, because it helps. Why? Because thiroid hormones has a lot if iodine. By eye about 60 %.
2. Every girl from age of 8 should be testest for iodine level and thyroid hormones levels. All. Not only TSH. This two are connected but also indepeddend. In same hand it is connected by other hormomenes, has relations, dependance, influence in metabloisem of many things and many functions of body. Just name it.
2. Every girl at age 14 and expecially every mother should be common with symptoms of thyroidism, low iodine symptoms and consequences. It is terrible. Deadly. Sad. Be aware that thyroid gland hormones and lack of iodine should be studyed seperatelly. I'm a boy (male), higly diseabled, can hardly walk. In my mothers branch of family 2 cases of deadly cancer proven. And grandmother suspected. What more prove do you want? Not enought.
I nearly stopped worseing my trouble. So much I'm still alive. Even insuline resistance, prediabetes levels are better.
My one member family whises You Healty New Year, a lot of happiness, a lot of Love and beautifulf mind, to sweat from effort, to solve problems.
P.S.
Too much to write anything. If need, ask on massager.
Sorry to hear about the challenges you are facing. I have a good friend who I think has OCD and anxiety. When her vitamin & mineral levels are optimal I think she seems better. The key ones are Magnesium, Zinc, manganese, Vit D and vit B6 (P5P) and vit B12. Iodine is controversial and my friend is not taking it but I am & I have found it helpful for hypothyroid, asthma and brain fog.
There is a condition called kryptopyrolluria or KPU which can be genetic or acquired and it is caused by deficiencies in the above vitamins & minerals (& a couple of other trace minerals e.g. chromium). It can result in hypothyroidism, allergies , muscle weakness, ADHD & other neurological symptoms. It is surprisingly common 1/10 of the population has it & it waxes & wanes.
It takes several months to reach optimal levels of vitamins and minerals but it is worth persevering with.
Like many members have suggested you may not be adequately treated so may need a bit more thyroid hormone.
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