I wonder if I can ask for some advice on behalf of my daughter?
She is 18, and in the last year has been diagnosed with Pernicious Anemia, PCOS and recently blood test showed positive thyroid antibodies (not sure of correct term).
GP has been fairly disinterested, and a couple of weeks ago she saw a private endocrinologist. She has some hypothyroid symptoms- dry skin, cold feet and hands, and a slightly inflamed thyroid gland - possibly causing her discomfort in her ears and throat, which is one of her most irritating and persistent symptoms.
Endo suggested trialling 6 weeks of 25mg of thyroxine to see if any changes - and if not we can rule out her thyroid as being the cause of these symptoms. However in the last week her mood has really dropped- she has (amazingly) been very buoyant in herself despite these health challenges- but she is so flat and sad it’s very out of character.
Could the thyroxine be affecting her mood?
I know you are all so knowledgeable and have a lot of experience- any thoughts gratefully received
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SAM2608
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Do you have any test results you can post, along with their reference ranges (these vary from lab to lab).
Postive thyroid antibodies mean that she has autoimmune thyroid disease, known to patients as Hashimoto's. This is where the immune system attacks and gradually destroys the thyroid resulting in hypothyroidism. The symptoms you describe would seem to confirm this.
Endo suggested trialling 6 weeks of 25mg of thyroxine to see if any changes - and if not we can rule out her thyroid as being the cause of these symptoms.
This may backfire. Most endos are diabetes specialists and know little to nothing about treating thyroid conditions. If her results suggest she should be started on Levothyroxine then a normal starter dose would be 50mcg unless the patient is a child, elderly or has a heart condition. Taking just 25mcg is enough to switch off the body's production of thyroid hormone but isn't enough to replace that and then provide the amount needed to deal with the hypothyroidism. Further increases should be added 25mcg at a time as needed, retesting every 6-8 weeks until optimally medicated.
Another way of starting Levo is to dose by weight - 1.6mcg per 1kg of body weight, then adjusting dose as necessary further down the line.
Could the thyroxine be affecting her mood?
Brands differ, not in the active ingredients but in their fillers, and some people are better with one brand than another. Many people don't do well on Teva brand or Northstar 25mcg (which is Teva rebranded). The side effects can be different with different people.
Thank you Seaside Susie. Hmm that’s rather a worry that it could backfire as she’s been pinning her hopes on this helping - so difficult.Results from her last bloods were:
Se thyroid peroxidase Ab conc - 30.1
Serum free T4 - 13.4
Serum free T3 - 5.2
Serum TSH - 2.3
So endo said her thyroid is functioning ok, but these grumbling symptoms may be due to her thyroid so worth trying.
Since these results (from about September last year) she has gone gluten free and symptoms around her periods (Pcos) really improved...so I don’t know if she should just stop the thyroxine and just leave it for now. Horrid not feeling ‘right’ when you’re so young and she’s not one to let things get her down usually. Feel concerned 😟
Have you got the reference ranges, we can't interpret results without them as we can't see where in range they are, as I mentioned these vary from lab to lab. But to be honest results that are 7 months old are irrelevant now, they could very well have changed especially when Hashi's is present. She really needs a new test to get current levels.
An NHS endo would not have prescribed Levo based on those results. If the antibodies are over range they'd want TSH over range too, but every TSH range we see here goes up to at least 3.5, and others we see here go up to 4.2 or 5.5.
I will dig out results and look for ranges. The endo was on the recommended list from Thyroid Uk and has been popping up on the news recently...he seemed very knowledgeable and empathetic (from what she told me) and was up for ‘giving a low dose a try’. But now not sure if she should just stop it as she seems worse! All so confusing as she has these other autoimmune conditions going on too.
Once we're diagnosed as being hypothyroid we must take thyroid hormone replacements.
They have a very important job within our body and brain and heart have the most T3 receptor cells. T3 is also called liothyronine and we usually get prescribed levothyroxine (T4) that should convert to T3 and it is T3 that is needed in our millions of T3 receptor cells and brain and heart have the most.
Thyroid hormones enable all of our body to function as normal. It can take some time to find one make that resolves symptoms.
Our oldest thyroid hormone replacement was NDT (natural dessicated thyroid hormones) made from animals' thyroid glands but removed recently by the British Thyroid Association (due to cost I should imagine). It is the oldest thyroid hormone replacement given since 1892 and we no longer died an awful death. Why should they withdrew such a proven replacement. Mind you, some people do not improve with it but it is worth a trial.
Also B12, Vit D, iron, ferritin and folate should be optimal.
Always get a print-out of blood results for your own records.
More likely lack of thyroxine affecting her mood. Being hypo has an enormous effect on mood and brain function - the brain needs a lot of thyroid hormone. If, as Susie explained, taking such a small dose has had the opposite effect to the one desire - i.e. making her more hypo, rather than less - then it's perfectly possible that that is what is affecting her mood.
Endo suggested trialling 6 weeks of 25mg of thyroxine to see if any changes - and if not we can rule out her thyroid as being the cause of these symptoms.
Well, he's got that wrong, for a start! Due to a low dose possibly having the opposite effect, etc. He cannot rule out anything until she's been on a decent dose for a decent amount of time. You can't just trial levo for six weeks, that's a nonsense. Even if he'd started her on 50 mcg, it's hardly likely to have a miraculous effect. It takes months of slowly increasing the dose to feel any benefit. But, that's endos for you! My first endo told me that after two weeks, I wouldn't recognise myself! Well, she was right. I didn't. But not in the way she meant! I felt ten times worse rather than better. But, very few doctors of any kind have any sort of grasp on real life.
But, I digress...
But now not sure if she should just stop it as she seems worse!
No, definitely not. Presumably, she will see the endo again at the end of the six weeks, and have labs done, yes? It's anybody's guess what the labs will look like. The TSH - which is all they normally look at - may go down, but it could even go up! So, she has to use endo-psychology if she wants to continue with levo. Tell him that she has noticed an improvement in her symptoms, but feels that she really needs an increase in dose to make further progress. If she tells him that she feels worse - or no better - he will just stop the levo and that will be that.
If she stops the levo now, what will probably happen is that she will feel wonderful at first - everyone does - but it won't last. Little by little, the symptoms will come creeping back and she could even end up feeling worse than before she started. The fact that she feels better on stopping the levo does not mean that the levo was wrong for her. It just means that she's stopped it. If you see what I mean.
Yes, unbalanced thyroid hormones can cause mental changes from alterations in brain chemistry.
Neurotransmitters are chemical substances made to transmit messages in the brain. The well known ones are glutamate, GABA, dopamine, seratonin, oxytocin, etc.
Hormones adrenaline & noradrenaline are also known as neurotransmitters, together with thyroid hormone T3 that is found in large amounts in the brain & is influential in regulating our emotions in conjunction with other neurotransmitters. Many people with low levels of T3 or unbalanced thyroid hormones may suffer low mood or depression.
Re your daughters PCOS there are many links between this & unbalanced/low thyroid hormones. If you google something like “PCOS & thyroid hormone’ you will get many hits. It's the same for 'pernicious anemia & thyroid hormone'.
Unless your daughter has a heart disease, the dose prescribed is very low and might not be sufficient to raise her Free T4 and Free T3.
Levothyroxine is T4. This is an inactive hormone and is supposed to convert to T3 (liothyronine) and it is T3 that's needed in the millions of T3 receptor cells and the brain and heart need the most.
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