Did Fluoxetine Cause my Daughters ME?

I believe my daughters Myalgic Encephalomyelitis was triggered by a toxic reaction within her body to Fluoxetine (Prozac) an anti depressant prescribed by Children and Adolescent Mental health Service (CAMHS) for her social anxiety and generalised depression. (later diagnosed with Autism). I also believe it caused her to have Trichotillomania (Obsessive Hair Pulling Disorder),

• Elizabeth was seen by  CAMHS team psychologist for social anxiety, generalized depression and trichotillomania.

• She was seen by a CAMHS team psychologist  from 23rd October 2017 to 14th August 2018.

• She was seen by a different CAMHS team psychologist from 14th August 2018 – 24th January 2019. Discharged as anxiety and depression now mild/moderate and self manageable rather than moderate/severe and chronic and unmanageable.

•My daughter was seen by Psychiatrist at CAMHS from 17th Dec 2017 through to 2019

Fluoxetine started at 10mg on 17th Dec 2017

Fluoxetine increased to 20mg on 2nd Jan 2018

              (Trichotilomania started April 2018)

Fluoxetine increased to 30mg on 19th June 2018

Fluoxetine increased to 40 mg on 3rd July 2018

             (Fatigue, pain, illness symptoms noticeable by 7th Sep 2018 but from photographs retrospectively it was evident from the beginning of August 2018)

Fluoxetine ceased at my request on 19th Dec 2018

(I felt the Fluoxetine may have been responsible for low range cortisol and all of her symptoms)

I was assured by doctors, psychiatrists and pharmacists that Fluoxetine would be out of her system in 12 days. What they failed to mention or maybe didn’t even know themselves is Fluoxetine is a fat soluble drug meaning every single cell of the body from brain tissue to organ tissue to gland tissue to muscle tissue has absorbed this medication and it could take as long as 12 months to metabolise and excrete it.

No return of anxiety or depression since stopping the Fluoxetine.

A dramatic decrease in trichotillomania episodes.

Could all the symptoms be from Fluoxetine medication?

At the beginning of November I had asked GP for a repeat prescription for the 40mg Fluoxetine as CAMHS had stopped doing repeat prescriptions. The GP questioned the high dose considering her age. He asked me to check with psychiatrist  at CAMHS.. I found out that 40mg was twice the NICE recommended guidelines for her age.

6th November 2018 –  met with psychiatrist who assured me the 40mg was fine and my daughter’s anxiety symptoms were managed well by it. He re-prescribed the 40mg.

7th December 2018 – I found a research paper about Fluoxetine lowering cortisol levels in rats. I realized not a single doctor that we had seen had considered that her symptoms were a reaction, side effect to the Fluoxetine. No one had even mentioned that Fluoxetine can lower cortisol, it is not on the list of known side affects.

Fluoxetine Side Effects Link = https://www.netdoctor.co.uk/medicines/antidepressants/a28927/fluoxetine-side-effects/

Fluoxetine and Cortisol in Rats =
https://www.researchgate.net/publication/314238907_Investigating_the_effects_of_fluoxetine_on_cortisol_and_thyroid_hormone_levels_in_rats

‘Conclusion: By affecting the activity of different levels of hypothalamus-pituitary-adrenal hormones axis, Fluoxetine decreases the level of cortisol hormones.’

There are also studies that show antidepressants can lower ACTH production, causing a lower cortisol production.

ACTH and Cortisol with Fluoxetine =
https://pubmed.ncbi.nlm.nih.gov/11465636/

I was now worried that every time I have allowed her to have this medication she has been reacting and in essence being poisoned by the medication. I knew that she would not be safe to just stop the medication because of withdraw, but continuing to give it to her scared me- it was the weekend I had no one to ask. I was beside myself with worry and fear and upset. On the morning of Saturday 8th December I spoke to both a GP and a pharmacist from  CCG via NHS111 both agreed I could drop her to 20mg for the weekend then try and speak with psychiatrist on Monday morning The pharmacist said the half shelf like is 3-4 days so we should not expect to see massive changes for up to 12 days if the medication is causing the side affects after the 12th day there would be significant improvements. She was also worried about withdraw symptoms because of the length of time she has been on the medication. She said from about 5 days in there could be signs she is struggling with the halved dose being 2 extreme.

10th December 2018 –  I spoke with the psychiatrist who suggested stopping the Fluoxetine immediately for possible adverse physical health symptoms. I discussed at length my concern re my own research and the pharmacists warning on Saturday about suddenly stopping the medication. He said he would think on it and speak to the trust pharmacist and call me back n Wednesday 12th December.

There is LOTS of research and evidence online about how Fluoxetine affects cortisol. Most people don’t have their cortisol regularly checked- in fact my daughter wouldn’t have unless I had requested it, no medical person thought to test it.

Fluoxetine alters cortisol levels =
https://forums.phoenixrising.me/threads/prozac-fluoxetine-and-other-ssris-alter-cortisol-and-cytokine-levels.23160/?fbclid=IwAR2jeqeyTufw6NWeEPnBsm2X4vzak5VNfihha97ZQrO_PadsmcSYNtkBogc

‘Plasma cortisol and fluoxetine levels were measured using high performance liquid chromatography (HPLC) methods with applying Shimadzu chromatograph with UV detection. Plasma cortisol and fluoxetine levels were measured at time zero (before therapy) and after 6h, 24h, 2, 4, 6 and 8 weeks of fluoxetine administration in patients with major depression qualified for therapeutic drug monitoring (TDM). The study included 21 patients (14 women, 7 men; mean age 29-75 years) and 24 healthy comparison subjects. The patients had a mean score on the 21-item HDRS. As the effect of fluoxetine administration the decrease of the level of cortisol was observed in patients who responded to the therapy (the reduction of points in HDRS scale in at least 50%)’ About Fluoxetine (My daughter was on 40mg from June 2018)


NHS Information on Fluoxetine =
Fluoxetine (Prozac): an antidepressant – NHS (www.nhs.uk)

The usual dose of fluoxetine is 20mg a day in adults. However, you may be started at a lower dose which is gradually increased to a maximum dose of 60mg a day. Some people might need to take a lower dose of fluoxetine, or to take it less often. This includes people with liver problems, and elderly people. The usual dose of fluoxetine in children is 10mg a day but this may be increased to 20mg a day. An overdose can lead to potentially serious symptoms such as: vomiting shaking feeling sleepy agitation heart problems. lung problems seizures However, taking fluoxetine for more than a year has been linked to a small increased risk of getting diabetes. But you will be regularly checked for this. (my daughter was never been offered any sort of screening for being on Fluoxetine for so long)

If you stop taking fluoxetine suddenly you may get unpleasant withdrawal symptoms. These include: dizziness feeling sick numbness or tingling in the hands or feet trouble sleeping feeling agitated or anxious headaches shaking

Risks from withdraw coming off Fluoxetine =
https://www.nhs.uk/mental-health/talking-therapies-medicine-treatments/medicines-and-psychiatry/stopping-or-coming-off-antidepressants/

You should always talk to your GP, prescriber or pharmacist if you are thinking of stopping your antidepressants. A dose of antidepressants should be slowly reduced: over 1 to 2 weeks if treatment has lasted less than 8 weeks over 6 to 8 weeks if treatment has lasted 6 to 8 months This is because although antidepressants are not classed as addictive medicines, they can cause serious withdrawal symptoms if stopped suddenly. These symptoms may be entirely new or similar to some of the original symptoms of the illness.


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